Baby Daylon

YAY!!!

2012-02-16T11:43:00.000-06:00

Daylon

took

TWO WHOLE STEPS

today!!!!

It's a miracle!

Tripp

2012-01-16T01:46:00.001-06:00

As many of you know, Tripp has returned home and is no longer in pain. Brian and I are heartbroken for his wonderful mama, Courtney but we're so grateful that he is enjoying the peace that we've all prayed for. He was such a great fighter and will never be forgotten. He has touched all of our hearts. He will be missed, but never forgotten.

FINALLY- an update!

2012-01-09T13:30:00.000-06:00

not the best photo of Keira, but I love how big Daylon thinks he is in the one!

It's been almost 2 months since my last post! I can't believe I've let time get away from me like this! A huge thanks to all of you who have phoned, email or Facebooked me about Daylon's progress. Your support is incredible! Since November, we've been busy getting ready for and enjoying the holidays. Between school and church Christmas activities and our family traditions we've stayed very busy. Today is actually, the big kids first day back from break!

Christmas morning wearing the hat Caleb bought him for a gift

Daylon LOVED the Christmas season. He really doesn't have a clue about Santa, but he enjoys saying "Ho!Ho!Ho!" every time he sees a bearded man and now seems to understand that Jesus was once a baby. He loved the lights, tearing wrapping paper, Christmas songs and his new joy: Hershey kisses. He surprised us all with his willingness to stay away from the village, wrapped presents and lower ornaments on the tree once we told him that they were off limits. Possibly, more than Christmas, he enjoyed New Year's Eve. We always celebrate Eastern Standard Time New Years with the kids. We watch the ball drop, have sparkling apple cider and the bang on pots and pans to ring in the New Year. He was a little madman with his spoon and pot. It made me so happy to see him light up like that! I couldn't help but think of how far he's come over the last year. I am so grateful for the many, MANY blessings we've seen in our lives.

New Years Eve at Gma + Gpa De La Cerda's. I was smart enough this year to not pass out spoons until 30 secs were left! Haha!

At the moment, Daylon's skin is going through a bit of a rough patch, but I'm sure it will begin to heal soon. His foot, back, back of his neck and diaper area have opened up and been a bit of a problem for him. We've just come to expect these changes in his skin and pray that they will continue to become further and further apart. The problems with his foot kept him from standing for a couple weeks, but just over this weekend, I've seen him pull himself up once or twice. I just wish his foot would heal so he could start walking. He gets so frustrated that he can't keep up with other kids. It tugs at my heart strings watching him try to make friends.

Enjoying the Claim Jumpers "Mother Load Chocolate Cake" on our date night with the boys. If you couldn't tell from his face, he LOVED it!

One of the biggest and most exciting piece of news, is that we were given the "OK" for Daylon to attend church and the movies. That means two things: one, he is now healthy enough to completely be out in public and two, we can start attending church as a family for the first time since his BIRTH!!!! Going to church is something the other four kids were brought up doing every Sunday and now Daylon can participate too. We've been waiting for this for such a long time!

Silly boys

WHAT.A.DOLL.

As far as development, Daylon is doing great. He says about 50 words now and understands most of what's being said to him. He is such a little miracle. He's learn to climb the stairs at lightning speed and pull himself up onto chairs using his arms. You know that saying, "When life gives you lemons, you make lemonade"? That Daylon through and through. He has so many obstacles and he either hurdles them or finds a way around. He's taught himself how to use his knee as a foot and has switched to left handed since his right side doesn't work quite as well.

Happy

inquisitive

Mad (he wanted a "cup")

Sad ("no cup until you say please and ask nicely")

...and so he did. :)

More than anything, I notice that Daylon is happy. He's spunky and sometimes even naughty (he's even been in time-out!) and I know it sounds crazy, but it makes me so happy! His smile just melts hearts. He's such a silly, little monkey. He has had more trials than I have ever known another to have, but he's finally able to enjoy life. Everyday we witness God's hand in our life and it's such a blessing. We are so thankful for all of the progress he's made and all the obstacles he's overcome. We're thankful for Dr. Tolar and Dr. Wagner and their research and the desire that they have to help save these beautiful butterfly children.
We're thankful to all of you for stopping by and checking in on Daylon. Although, I'm not always the most faithful blogger, I am always so grateful for the army of people around the world who love our son and our family and support us in this journey. We love you.

3

Halloween and more

2011-11-15T03:40:00.001-06:00

First off I want to say that I was blown away by the response EB awareness week got! I am so impressed and so thankful to have such wonderful people in my life, such as you all, that have taken on the task of spreading awareness. From the bottom of my heart, Thank you!!!

The EB awareness posts raised some questions in Sweden and an article was written on Daylon and his experience with the Bone Marrow transplant program at the University of Minnesota. Their hope is that if they can get Daylon's results out there, their government could consider the transplant as a worth while cause to fund and have doctors invest their time in (social health care there). There was a bit of a translation hurdle, but overal, the aricle is pretty good. Mostly,we are just so grateful and excited to be able to help any other EB family try to find hope for their child! You can find the article HERE

   As far as Daylon is concerned, life is pretty good. All of the kids have been sick recently, a couple with pneumonia and Daylon toughed it out pretty well. Don't get me wrong, he did get sick (pretty sick for most) but he stayed out of the hospital that's what we love. As luck would have it, he was antibiotics for an infection during the other kids sick time so I think that had a lot to do with it. He was fairly healthy last week and now he's coming down with a little something again the last few days. The constant corneal abrasion don't help anything, to be honest. Today when he was feeling well enough to get off my lap, he would crawl around for a minute or try to play and then crash into something since he can't see a thing. Then cry and rub his eyes, then scream cause he hurt his eyes and then sit for a couple of hours with me. It was like this over and over today. I tried stopping him from crashing, trust me... but let's just say he's a fighter in more ways than one. :) I'm hoping that the rest he gets tonight will help to bring a happier day tomorrow
   We have a doctors appt on Wednesday and we're praying that his labs look a little better. I know it's not realistic, but I can't help but have this idea that the renal failure will just, POOF! go away. I can't even process the possibility of a kidney transplant. My mind just won't allow it. Who knows? Miracles happen everyday and Daylon has been blessed more than any one I've ever known, so maybe right? =)

   Because I missed Halloween, here are some pictures of Daylon in his costume and at the pumpkin patch (I'm throwing a couple in of the other kids too for good measure!). It was Daylon's first year trick-or-treating and our first year going as a family since he's been born!! I can't even tell you how good it felt to do some "normal" family things. It's finally cooling down out here and we've been able to go outside, heck, I can pick the kids up from school without his skin breaking down! It's fantastic! Back to Halloween, I have to say it was so adorable to hear Daylon say, "Teet-teet" (trick or treat)! He stayed on the sidewalk and couldn't care he was missing out on candy (he can't eat, so he has no idea what it is), but he loved going for a walk in his car...OUTSIDE the house!

He LOVED his pumpkin!!

We were actually able to have his foot unbandaged that week!

He stands!...he keeps his foot tilted, but HE STANDS!!

Keira the candy corn witch

Caleb as Frankenstein's monster

Violet as a jellyfish

Sadie Bug the Lady Bug

EB Awareness Reason #3

2011-10-31T13:35:00.000-05:00

This is my final reason to raise EB Awareness on the final day of EB Awareness week this year. Reason #3- To Cure the Incurable.

   I've given a lot of thought as to how I want to go about explaining the importance of this reason for me. There is a large portion of this blog's following that either know Daylon personally and have seen EB and how he's suffered or that follow several EB blogs and have heard all of us parents describe on a regular basis what our children go through living with this disease. It's a horrible disease. Before Daylon, I would have never imagined that such a horrible disease could possibly exist. There have been many, many times especially early on in Daylon's life when I would be in the middle of a bandage change or moments after I hurt him by trying to help him and I would think, "How can this be?".

   Yes, it's painful. Yes, it's heart wrenching. Yes, there aren't enough words and it's worse than any parent could possibly describe. The awful truth is, there is no cure. With a cure comes hope.

I believe that we are close to a cure. Really close. There are some clinical trials out there trying to find a cure. I truly believe in the possibility to cure this disease with the Bone Marrow Transplant program at the University of Minnesota. There are still kinks that Dr. Tolar and Dr. Wagner are trying to work out, but they're making progress all the time. Unfortunately, like any other new development, they are only allowed to make progress when there's funding for the research. Because it's not a disease that a large population of the world suffers from, it's hard to get government funding, so it's left to the people. The more research they do, the safer transplant gets.
   On October 11th of this year, exactly one year after Bella's passing, Nicholas Moore's mom posted to his blog that he had passed away the better part of a year after transplant. Thanks to funding, the last several transplants have been safer and the children are doing better than before the changes were made.

    I am an EB mom with hope for her child's future...and I want other parents to feel the same way. I believe these doctors have the possibility of curing this horrific disease sometime in the near future.

   I can tell you all day long how I think we're close, but I realized pictures can speak louder than words....

The following image may be too graphic for some.

April of 2010- Before Transplant

6 Weeks Ago-

   Raising awareness means that when people are looking to donate for a cause, EB can come to their mind because they actually know what it is. It's a pretty important reason to raise awareness.

   If you're interested in donating towards the cure now, you can text "Bella" to 50555 in honor of Bella or visit the puck website HERE to donate on a secure website. If you or someone you know is looking for a charity to donate towards at the end of the year for a tax write off, P.U.C.K. (Pioneering Unique Cures for Kids- Dr. Tolar's and Dr. Wagner's research ) accepts donation all year long! :)

   A HUGE thank you to all of you who have helped in spreading EB awareness this week!! The support that the EB community has received from all of you; our family, our friends and our support system has been amazing!! Together we'll touch the world. We are so grateful.

EB Awareness- EB kids have feelings too

2011-10-27T13:06:00.000-05:00

EB awareness week continues! Reason why awareness is important to us #2- EB kids having feelings too.
    Being the parents of an EB child means that your weeks are either hard or harder. Taking care of the child is work and it can be very hard, but the parenting aspect of having an EB child is more of what I am referring to. When a child is bullied at school, it doesn't just effect the child, it effects the parents too. It's a hard thing to watch happen and know you can't completely control the situation and shield your child from the pain of others...the pain of life. The same is true watching your child suffer through Epidermolysis Bullosa.
    Lately, things have been rough. It is so hard to watch people stare at Daylon when we go out and make rude comments like he can't hear or understand their hatred for something they don‘t even begin to understand. He is a person. We have been kicked out of stores (Yes. You read right.) and been the reason for an obnoxiously boisterous parent to literally drag her children (by the collar I might add) and flee the store yelling to the point that everyone, including the cashiers stop and look, "LOOK AT THAT BABY!! LOOK AT THAT BABY!". Yeah. I'm not joking.

     That was just this week.

    Last May in a Target store, a middle aged woman had her attention directed to Daylon, after her adult daughter gasped. She quickly turned to look at him and replied, "Oh. That's just gross!" and then surprised by what she let slip, sheepishly left. I stood there, with the blood rushing to my face and the sting of her words pinching my entire body. I have begun to worry that if people keep behaving like this when he goes out that he'll develop low self esteem and think of himself as less that than the perfect little boy that he is. I don't want him to be afraid to go outside and enjoy life. After that woman's comment I went back to the hotel, cried of course, and then made little business cards to hand out to people.

Front

Back

      As Daylon’s mom, it breaks my heart into a thousand pieces to watch him go from playful and happy, to embarrassed and shy when he notices people staring or sees children pointing. At just two years old, he lowers his head and stares at the ground. I now have these business cards to hand out and they have been helpful in convincing store managers and some strangers that he’s not contagious, nor a threat to anyone, but I can’t spread the word to everyone. Especially to those loud, stubborn people…you know the type.

    Thank goodness for EB awareness week.

    A popular comment we hear after people realize that he’s not contagious is, “ Why don’t you keep him at home so people can’t make a big deal or stare at him?”. I mean this the nicest way possible, but that is not an option. Yeah... No. I’m not leaving him locked up at home as if I were embarrassed by him. EB sufferers are like anyone else and have every right to go out and socialize without feeling like they’re being judged. They already live a life of pain, how can they possibly be denied interaction with the world. That’s just ridiculous.
   Most times, children are the worst at staring, pointing and ugly remarks. I can only imagine what school aged EB children most go through not only at school, but in public, understanding exactly what is being said.

   Wouldn’t it be wonderful if we could raise enough awareness of EB that when a stranger sees an EB child, they could recognize EB and offer a warm smile instead of a glare. Wouldn’t it be wonderful if we could always remember the God loves all of his children and is especially with those who are sick and afflicted.

    “…Inasmuch as ye have done it unto the least of these, my brethren, ye have done it unto me.” Matthew 25:40

     If we could raise enough awareness, we could take away one form of pain from the lives of those who live with the disease called Epidermolysis Bullosa.

     Check back soon for Reason #3- To cure the incurable

Raising EB awareness--the first few weeks

2011-10-25T18:35:00.002-05:00

My goal this week is to post every day or two on different reasons of why raising EB Awareness is important to Brian and I. Today, I'm starting with:   The new parent

Every parent has their own story of the birth of their child...and every mother loves telling them. Funny, sweet, memorable. Daylon's birth story is not one I speak of often. It's not just because it's not a funny story, but because how we felt during that time brings up very personal feelings and I don't know that there are enough words to describe how we felt. For the sake of EB awareness week, I'm going to share our story with all of you.

   After we had the twins, we contemplated being done with having children. Four always seemed like a good number for us. As we prayed for an answer, we knew that there was one more child to join our family. The pregnancy ran like a normal pregnancy for me- complete misery. :) But after having three other pregnancies, I was okay with things. We were just so excited to meet our little boy...a brother that Caleb desperately needed to stabilize all the girly in our house. At 38 weeks my uterus measured 8 weeks further along than I was and since my past single births were 9lbs 11 oz and 10lbs 3 oz, they were preparing for another big baby. Everyone in the operating room was making a guess at the baby's size and laughing. Feeling like a seasoned veteran, I wasn't the least bit nervous and just laughed as people threw out ridiculous answers like, "14lbs!". As my OB cut my belly and reached in for Daylon, I remember him saying, "Ok! Let's see what we got!". I couldn't see over the curtain (and my mirror only let me see the back of the baby), but I heard the room grow quiet. The only thing I heard was Brian say, "What happened to his face?" . Once the doctor turned him around, I was shocked that his face was covered in blood and the skin on the tip of his nose was missing. I held him for a moment and kept asking, "What happened?" While the nurses did admit that they had never seen anything like it, they were sure he had just scratched too hard in utero. Brian followed them back to the nursery and when he visited me in the recovery room, he brought pictures of his weird, long finger nails. I remember thinking that they looked like Edward Scissor hand's or Freddy Kruger's nails. When they brought Daylon to the recovery room to visit with me, the stay was short. He got to meet his big sister and two grandmas, but his lips turned blue and he had trouble breathing. He was taken away overnight for observation. In the following months, we would learn that this was normal Daylon behavior.
   The next morning Daylon was brought back to our room and because our pediatrician was in his last week of recovering from hip replacement surgery, a pediatrician new to us looked Daylon over. I told her that I was concerned about his nose and his nails that were now looking to lift off of his fingers, but she told me that he probably rotted his nails by sucking on them and their length was more than likely due to being further along in pregnancy than we thought. I just kept thinking, "How can that possibly be?". By that afternoon, when I changed his diaper there were blood blisters all over his bottom and my heart just sank. Why is this happening? One of our biggest blessings that stay was to have the same nurse almost every day we were there. She watched these blisters form on his bottom with me and agreed that something wasn't right. I called the "stand in" Pediatrician and she told me it was probably just a rash. She then said that she couldn't believe that our nurse was encouraging a paranoid mom. I was so upset with her. By the next day, the blisters were on his elbows, feet, back and covered his squirming legs. I told my OB, the anesthesiologist, our visitors and every nurse that entered that room begging for help and they all said the same thing, "I don't know what that is. You should ask the pediatrician."
You know that dream that everyone has where you're running and running and someones chasing you or you're trying to get to someone and you never get to where you want to be? Then you wake up all sick and anxious? That is EXACTLY what these days felt like. I was begging for help, in one of the best hospitals in CA, and it was like no one could hear me. I felt like I was going crazy. He was not my first kid and I was not some paranoid mom. Something was wrong with my baby. I knew he was off recovering, but I called our Pediatricians office and asked that he come see Daylon.
   While the hospital doctors didn't know what was wrong with Daylon, they did know something was off. I had to lay on the hospital bed while the doctors looked over every inch of my body looking for an infection or STD that I may have passed on to my new son. It was so humiliating ...but at least I was kind of being heard.
   Early the next morning, the nurse came in to remove the little round band-aid that had been placed on Daylon's thigh his first day of life after he got one of the Hep vaccines. When she pulled the band-aid off, the skin under it came off too. Daylon screamed in pain and the nurse and I were horrified. I remember how sick I felt. How I just wanted to go run and hide somewhere. Thankfully, about 30 minutes later our wonderful pediatrician, Dr. Blumberg walked into the room. I was sitting on the edge of the bed preparing to walk Daylon back to his bed (I'm still recovering from the C-section) when he entered. I remember the second I saw him, I was so relieved that there was finally someone here who would listen to me that I started bawling. I pleaded with him to "please help my baby!" Then continued, "He looks like someone dragged him through the Amazon and gave him some foreign disease!". He looked him over and said he wasn't sure what he had, but he would go get help. He returned about 10 minutes later with a NICU doctor who examined Daylon over and diagnosed him with Impetigo. The diagnosis just didn't sit well with me. I had seen Impetigo several times working at a preschool in previous year and it never looked like that to me. Dr. Blumberg looked at the NICU doctor and said, "I was afraid he had Epidermolysis Bullosa." ....and that was the first time I had ever heard that name.
We were discharged from the hospital the following day with antibiotic cream to apply on the blisters several times a day. As the next 24 hours passed, the blisters not only didn't go away, but grew in size and multiplied. Around his mouth and chin was covered in little blisters and there were even blisters growing in his mouth that were painful enough to have him quit eating. The morning after he was discharged I sat on the couch of my parents house (thankfully, they had us spend the night so they could help with the other 4 kids) with Daylon trying to change his outfit for the 10th or so time (as the blisters would pop from movement, he would get wet and need to be changed). He was screaming in pain, I was crying and Brian was pacing the living room. I had this sinking feeling in my soul that he was very sick and dying. We decided then and there that he was going back to the doctors. Brian video taped Daylon's body before we left. Excuse the bounciness, we were a bit anxious as you may have guessed.

The following video may be too graphic for a few viewers-

   Thankfully, it was Dr. Blumberg's first day back and he got us in right away. He told us that he thought he had Epidermolysis Bullosa, a rare genetic disease that he had only seen once decades earlier as an intern in Los Angeles. He sent us to see a dermatologist immediately after. The dermatologist (which judging from their clientele in the lobby was a botox-y kind of dermatologist) gathered his fellow doctors and they examined Daylon and then left the room. Two of the doctors returned a short while later and said that they believed it was something genetic, but didn't know what, so they were having him admitted at the local children's hospital for testing. Infectious disease among others examined Daylon and once again, I was checked and then questioned... and then Brian was questioned. I really think they were sure I was going to suddenly confess, "Oh yeah! And then there was that 6 week stint during my pregnancy when I prostituted myself out...". The idea that two people would wait until marriage and stay faithful to each other was apparently too much for them to believe. Anyway,almost a full week passed. Sixteen...that's right...sixteen doctors later, we met Dr. Metz, a pediatric dermatologist who took a punch test of Daylon's skin.
She gave us the DEBRA website and told us to only look at this website. We were warned to stay off the Internet because it could drive us crazy and scare us as we waited for the results. It was difficult, but I was obedient. I printed off the list of the close to 20 different types of EB and went through each symptom guessing what he might have. Even just reading on Debra scared me. Reading symptoms that could come, discovering that our touch was doing these horrible thing to his body, learning that several of these subtypes carried shorter lifespan...is was so much to process. Honestly, though; if you mix this sort of news with the hormone changes a woman experiences shortly after giving birth, it's absolutely horrible for her. You carry this baby for 9 months knowing that it will all be worth it when you hold your beautiful baby and you start to plan what your life will be like with this new baby: pick out cute outfits, imagine those giggles from blowing raspberries, rubber duckies and bath time, etc, etc and in a second the dream is not only not possible, but your baby is sick and you don't know how to help or who to ask for advice because no one you know has heard of what your child has. I seriously remember watching a Pampers commercial with this crawling baby and the whole time I just thought, "How will he crawl?". I really began to worry when our fingerprints appeared on his head through his blanket from lifting his newborn body.
   At 3 weeks old, we were called to the doctor's to receive the results. We were told that he had Junctional Herlitz form of EB. I couldn't remember which one that was. Junctional meant worse than we were hoping, but still not horrible, right? She gave us a bunch of print outs and answered our questions including "Is there a cure?" and then we left. We were in the elevator on the way down when I started to read the print outs. I scanned for Junctional Herlitz and began to read, "Junctional Herlitz EB is a very severe form of EB. These infants often die in early infancy..." My head spun, my heart raced and I began to think I would pass out. Brian and I made it to the van, snapped in Daylon's infant seat, shut the doors and cried together. The idea of giving birth and burying your child within months made me sick. We felt so alone in the world. We have wonderful family and friends who love and support us, but we knew no one who had a child with EB, no one who knew what EB was. We didn't know how to diaper him, how to bandage him, how to bathe him, how to dress or hold him without blistering him. We had to come up with it all on our own and Daylon paid for our mistakes.

    My hope, is that no other family has to go with their child misdiagnosed and feeling alone and lost. If more doctors know of EB, then they can diagnose properly. The more people who know about EB, then the more people that have the opportunity to comfort a family with a newly diagnosed baby. Please spread EB awareness. Please share what you know about the disease with someone who doesn't (it's probably most people you know).
   We are so thankful to have all of you wonderful people in our lives. Thank you for being our friends and our support group. We love you.
Check back soon for Reason #2: EB kids have feelings too

Admitted...

2011-10-20T13:06:00.000-05:00

Content after his day of procedures was over

I'm not sure if I've mentioned this or not, but Daylon gets sick every morning. Seriously, e-v-e-r-y morning. He throws up for the first 45 mins or so that he's awake. Sometimes more, but never less. Three or four nights a week, the vomiting starts in the middle of the night and goes into the morning with an hour or so of sleep in between. As he's gotten older and his stomach content is no longer that of a baby's, this has become especially rough. In the morning, while he is sick, he is no mood to play and often cries with sudden screaming. During the day, if he's given anything too sweet (juice, yogurt), meat, veggies or red dye, then he becomes sick again. Am I sick of being sleep deprived and smelling like puke or worse yet, watching my son in misery? Oh yes. But this is his life and to be honest it's a huge step up from where he once was.
   Last week, as the temperatures climbed up to 100F, Daylon's benefits of transplant began to fall. His skin started to tear and slough, his vomiting became projectile, there was blood in his stool and one of my biggest fears, his cry and voice became hoarse. The hoarse cry is a classic JEB thing. It's a sign of the larynx blistering. When Daylon was a baby, his cry was a whisper and we would set our alarm clocks for every 15 minutes so we could check and make sure he wasn't crying. Because the damage from the past, Daylon can't afford to blister in his throat and airway now. In the middle of the night on Friday, he rubbed his eye and caused a corneal abrasion. He kept his eyes closed most of the day Saturday and managed his pain quite well. He did however, continue to throw up through out the day. On Saturday night, while getting him ready for bed, I accidentally poked him in the eye and caused the eye to get worse and consequently, his pain. I hate that I hurt him. On Sunday he was in pain and cuddled most of the day. Just before dinner he was content enough to sit on the ground so I could drain my pasta (Brian was busy with the kids playing a board game.). Anyway, he picked up a foam sword and because he can't see, poked himself in the other eye causing abrasion #2. He was so miserable the rest of the night. Because he's been pretty healthy lately, I don't even have any pain meds in the house, so he just had to tough it out with Tylenol. It was awful. Over the course of the weekend he also started scratching like MAD! I have no clue why he so much more itchy, but that didn't help the skin situation. He was just plain miserable.
Monday morning while I was getting the girls up for school, I could hear Daylon start to dry heave. I went in to check on him and he was covered in blood and vomit. Brian came in and we cleaned him and his bedding up. He was breathing really quick shallow breaths and his whole body shook. He didn't have a fever, so I couldn't figure out why he was shaking.
   I will be honest, it does throw me into a bit of an emotional and mental funk when Daylon's JEB symptoms come back. His skin does still fall apart and he still has many signs of EB, but it's the JEB symptoms that freak me out. Once we got over the big scary part of the transplant and it really started to improve his condition, then I've just worried about things like kidney function and malnutrition. I guess I've just gotten to where I look at him and think that the transplant will keep him safe from JEB and what it brings. I do know that there's a chance it could reverse, but I don't let myself really process that most days and that's how I keep from going insane. The last few days, I can't help but think that. Daylon is 27 months old with a life expectancy of less than 12 months. I am grateful for everyday, but I do get scared some days too.
Anyway, I called the doctor to see if I could get him in that day and he wanted us to take him to the ER. Given Daylon's history, several different things could be going on, which is their big concern. He was admitted to the hospital, had a chest X-ray, a bowel X-ray, a head CT, blood cultures drawn, a virus culture, urine sample and MRSA check. In other words, he was poked and prodded all the live long day. For the most part, everything came back fine. His white count is high, probably from infection and stress and his bowel X ray shows build up and blockage. More than likely, his GI tract is blistered causing bleeding and slowing in his GI tract. All and all, it's just EB stuff and he probably would have done better at home, but EB is a lesser known disease at CHOC, so they like to error on the side of caution. After he pulled out his second IV in 12 hours, they decided to can the IV antibiotics and go with oral so we can just stick it in his gtube. Since the blood cultures were negative at 36 hours, I was able to convince them to let him go home.

This was written all over the couch in Daylon's room in the Oncology ICU. Needless to say, Daylon does not feel the same way the couch does about the hospital. :)

   We've kept him comfortable with bed meds and an increased doses of hydroxizine (his itch med). He's still puking a super ton and acting out of sorts, but there is about an hour after the pain meds kick in that he's happy and being his silly self. He even crawled for a few minutes last night. At one point, he opened his eyes a tiny slit looking for a toy, so I think there's improvements there.
      A huge thank you to everyone who has offered prayers and service on our behalf! Especially to my mom for driving out to Lake Elsinore last night and staying with my kids today (keeping up with 3 different school schedules and extra curriculum can be a total pain!) so Brian could work! You're a lifesaver Mom! Thanks!!
Oh! I've decided to post a family video of Daylon when he was first born for EB awareness week. In my opinion, it's a pretty powerful video. I hope that all of the blog readers will take the time next week and share what they know of EB with one person (if you feel like more, go for it!). Let's get the world talking about EB next week! Check back next week for the video and EB awareness post! =D

Class clown

2011-09-28T14:47:00.000-05:00

I can TOTALLY see Daylon being the class clown. All of our kids can be quite the little ham (I kind of think all kids are) but Daylon is the hammiest of the hams in our sty (play on words-not that our house is a mess...at the moment). He will do anything for a laugh, which is always reassuring for a parent; especially the parents of such a fragile guy. He will throw his head back and fall over, growl, randomly bark at those hear a pin drop reverent moments, smack himself with a plastic stick, etc, etc all in the name of humor. He can have us rolling easy-peasey.
Here he is about two months ago when he started feeling better and his true colors started to shine.

It's kind of funny to see how much more he's talking in such a short period. Anyway, his latest trick is launch his booster seat backwards so it's on two legs (he crashes into the wall). Yeah. I think I may have a heart attack.
The whole point of this post was to tell you all about his latest stunt. Just a little bit of a back story, Daylon is puking up anything solid so he sticks to drinking. He loves to drink milk specifically. If he's sitting, he has a cup. I think you got the drift. We tend to stick to open cups at the table because they're less likely to hurt his mouth. Okay, so story time. We're all at the dinner table, dinner is winding down and I want to show Brian how Daylon's coming on his counting.
Me- Watch this Brian! (turn to face Daylon) Daylon, let's show Daddy how big you're getting. Can you count?
Daylon- no!
Me-Please....
Daylon-(blows raspberry)
Me- (laughing) Ok. Count with Mommy!
Me and Daylon together- One...Two...
Me- Three!
Daylon apparently thought I meant, "...on three" when I asked him to count because when we got to three, he launched his milk cup across the table and all over dinner. We all jumped, I may or may not have gasped audibly and the kids just thought it was the funniest thing ever. Brian and I tried not to laugh, but truth be told, I'm a lot better at it than he is. :) It's definitely not something I want repeated, but it was so good to see a kid whose had little to no personality since his stroke, really act like a kid. I've really enjoyed watching the old him reemerge from his brain, even happier and crazier than before. Thank you for all your prayers! They're working!

Super Daylon!!

2011-09-14T01:10:00.000-05:00

Just a quick post to let you all know that we're still here and doing well. Daylon has MASTERED the word, "no" only it's more like "NO!" and uses it all the live long day. His mentality must be catching up with his age because it sure does seem like he's walking through the dark shadows of the Terrible Twos. =) He loves throwing things, especially his food...and suddenly, when I don't expect it and my back is turned. He is trying, trying, trying to stand, but nothing yet. Just a lot of bloopers. They would be funny except we have the double whammie of sensitive skin and a pretty colossal risk of another head bleed to worry about.
We've had a pretty cool Summer in California, until September when it's decided to climb well over 100 degrees several times. I know, right? Anyway, Daylon has need to spend some time outside everyday to drop off kids at school and then pick up Caleb at noon and pick up Keira at 3pm. Our school was meant to hold 400 and there are 900 enrolled. Needless to say, traffic is Kaaaa-ray-zeee! We have to park down the street and hike it up to the school, no biggie except for the smoldering heat. His skin has just kind of thrown it's hands up in the air and said, "Enough!". His face, chest, legs (especially thighs) and diaper area have just fallen to bits. He's still scabbing though, so that's a good sign that the transplant is still in full swing. I did wrap him back up for a few days last week, but he wasn't having it. He would just roll down the tubifast and rip the transfer off and then scream cause it hurt. I guess that's the down side to transplant. The kids forget their old life and go through culture shock when they have to relive part of it.
I just wanted to post some pictures I took today of Daylon is his super cute cape made by the women in the Corona Stake. So sweet of them and he seriously LOVES it! I had to pry it off of him to sleep. :)

any guesses on what he's saying here?

Our little Superman

Thank you for all of your support and love! You're wonderful!

All about Daylon

2011-08-14T15:45:00.000-05:00

   It's official. I'm a horrible blogger.

First off, thank you to all of you who have spent time reading Tripp's blog and posting comments for his wonderful family to lift them in their scary time. If you haven't heard, he's doing much better now! :)

   Daylon is starting to do better these days...let me catch you up...

   After his birthday party, we had about 3 weeks of non stop puking and weight loss again. His BMT doctor at CHOC realized that our home health care company had messed up the formula order transferring it  from MN to CA after the g-tube was put in and he wasn't getting as many calories as originally prescribed. After about a week of Dr. Buchbinder and I riding them, the correct order was delivered. He still threw it up, but at least what little was digested was higher in calories. :) Eventually, things calmed down and he's back to his 45 mls for 16 hrs a day and actually keeping it down! Woo-hoo!
He's had a foot infection that resulted in fevers and a sickly boy for a week or so. He also caught a cold that our older kids brought home and it turned to pneumonia...AGAIN. Man. I can't not wait for him to have his immune system back! For being as far out from transplant as he is, he should be a lot stronger. The whole malnutrition issue is to blame there. He is getting healthier. Slow and steady wins the race, right? The biggest and most exciting news of the last 6 weeks, is that as of last week, Daylon is crawling!!!!!! Holy Smokes, I can hardly believe it myself! He's not the worlds best crawler yet, but he is moving! Luckily, it's still slow enough that we can keep up with his IV pole. A month from now, this could be a whole other story! Ha, ha! Our new goal is to have him walking by Christmas. We'll just have to wait and see. Considering he wasn't supposed to be able to remember to breathe on his own, he's doing pretty well!
   As for his skin, he is kind of going through a bump this week, but it will get better I'm sure. His rubbing and itching are starting to take a toll on his face and chest, and the crawling not the best on his knees either, but they're holding up. His biggest boo-boo right now is on his left thigh. One of our older kids was being silly on the couch and Daylon happened to crawl near the couch, right as the older kid fell off. I don't know what hit his leg, but the skin tore in two spots taking off several layers of skin. His left thigh is notorious for being sensitive, but this is probably the worst it's been in the last 8 or so months. Anyway, he's back in cloth diapers for the time being and we dressed upper leg. He's such a trooper though. You should see how tough he is.
Speaking of, do you know that he doesn't even cry anymore when he gets his twice monthly labs drawn? He just looks at the guy and says, "Ow. Ow." it's more like he's informing us than complaining. He's so stinkin' cute.
   A lot of people have been asking to know where he's at developmentally and what his prognosis's is. As far as prognosis, we don't know. I asked Dr. Tolar in May if he was still dying and he said, "Well, all I can say is, if he dies this month, I would be surprised." He is still considered to be terminal and most doctors just say that he's a complicated case. The transplant can quit working at anytime, his kidneys and now his liver have gotten a bit worse over the last couple of months and an infection is still his biggest enemy (not that he has a lot of sores anymore, but his ability to fight bacteria is so much worse than before...I didn't think that was possible). The truth is, no one knows. I do know that I believe in prayers. I believe in miracles and I believe in Daylon. To be completely honest, part of the reason for my absence in blogging was that I was having a hard time finding the light in things and that can be just ugly. When his kidney and liver started acting up again and the need for a kidney transplant was brought up again (this time by MN), I kind of just lost it (the optimism, I mean). It's hard to explain but his skin clearing up and his personalty really showing like never before made the idea of losing him so much harder. I was grateful, but it's not like I could say. "Well, if he passed, at least wouldn't be in pain anymore" because he's not in crazy pain now. The neurologist told us that it's hard to get kids like him therapy, but he deserves all the therapy we can get him while he's still with us. That was another low. Thankfully, I have a great husband who has helped me stay sane :) and reminded me that nothing is over and Daylon still has a lot of fight in him. We take it one day at a time and today, he's doing great.

Second Birthday- Daylon at a glance

- he can sit independently
- he can sit from a laying position
- he can maintain about a 10 word vocabulary...right now it's
        mom (sadly, this is the name for both Brian and I...at least it's just us)
        mo (more)
        milk
        hi
       yeah!
        no
        ball
        up
        done
       please
       dog-dog
- he will hold a remote or cell phone to his ear and say, "hi"
- he is strong enough to hold his weight on his hands and knees and CRAWL for about 1 minute
- he can wave (when he feels like it)
- he can give high-fives
- he can laugh (that's a big one for us!)
- he yells when he's upset
- he can fold his arms for the prayer and sign , "Amen"
- he loves car rides and singing
- he holds his g-tube and opens the y port when he sees his medicine bag come out
- he loves Mickey Mouse Clubhouse and Pixar's Cars characters
- favorite toys- Zebra, Leap Frog Pal, balls, cars, books and light up toolbox set
- he will kiss and hug when asked
- loves to melt M&Ms in his mouth
- his favorite time of the day is scripture study. He loves to make the kids laugh (even though he's not supposed to) by being loud and silly...also, that's when the M&Ms come out.
- he loves to be outside (probably because he hardly ever is)

and now, just because I think how much he's changed is amusing, Daylon through pictures (left to right starting with his 1st b-day)....

This free digital collage created with Smilebox

Thank you for all of your prayers and kindness!

Tripp

2011-07-22T10:49:00.000-05:00

I have a post that I've been working on every now and again, when I find a chance. Things have been busy. In the meantime, please read and comment on Tripp's and his momma, Courtney's blog. Tripp has Junctional Herlitz EB too (but much worse than Daylon is now) and is very sick. She is experiencing the moments that Brian and I have dreaded for two years and my heart just breaks for her. Thank you all so much for all the support you've offered our family over the last year. It's meant the world to us.

Happy Birthday, Daylon!

2011-07-07T13:14:00.003-05:00

Daylon's birthday is tomorrow! I can hardly believe our little guy is going to be two years old! I never thought we would ever celebrate his second birthday, so this is a dream come true. Daylon loves, loves, LOVES balloons, so it made sense to us to have a balloon (and polka dot) themed party. He was in HEAVEN! Because Daylon's immune system isn't quite what it should be at this point post transplant we kept the kid list to just cousins and our EB BMT family. It was hotter than hot (I believe it was 100F) at 4pm when the party started. I was so nervous to have Daylon outside in that kind of heat, but close to 5 o'clock or so, we ended up testing the waters and having him go outside. He sat under the canopy for some protection and had a blast. All in all, his skin did beautifully and handle the heat with out any blisters or breakdowns. Woo-hoo! All five of my siblings (and their families) were able to fly down, along with my 3 Aunts and several of there kids (we planned it to go along with a family reunion). We loved seeing everyone and celebrating with so many loved ones. Because my mind (and consequently, words) are failing me and this moment, I'm just going to show pictures. Here we go!

The Pops came down from Sacramento area (an all day drive)! It was so fun to see them and the Ringgolds!

the kids loved playing with Chloe and Ali for the first time since Minnesota

Balloon Games

A balloon pinata

Daylon thought smacking the pinata with the bat was pretty cool! He almost didn't get a turn because I honestly, didn't think he would get it or care. I'm so glad he loved it!

The hit that did her in!

this cake looked better at the beginning of the party. The balloons are rice crispy treats and were sitting on dowels, but the blazing heat melted the marshmallows and fell completely through. I voted to throw them out after that happened (like 30 mins into the party) but my aunt Gwen had an idea to just set them on top. It works I think. Not my best cake, but oh well. Daylon liked it and that's what counts, right?. =P

Daylon got his own cake to dive into. We figured that since he was in a coma for his first birthday, it was only fair! :)

look at him grab it!

Balloon toys

For one activity, our good family friend, Gloria made balloon animals, hats, weapons, and jewelry for everyone.

Some more of our LONG DISTANCE travelers

Aunt Lindsay (from Idaho) holding cousin Elizabeth (from Utah)

this pictures cracks me up of my dad. Anyway, he next to Sara and Donald from Vancouver, WA

Aunt Gloria (CO) and Aunt Marla (WA)

Bubbles!

Presents! (Big thanks to Becky for taking the present pictures!)

We ended the party with a water balloon fight that turned into a full out war.
I stayed inside to save my camera so the pictures aren't the best.

My only regret (besides the heat, which there's no changing) is that I took more pictures. I was so busy running around that I missed some great moments. We feel so blessed to have been able to spend two great years with Daylon! We love you, son! Happy Birthday!!

Stay tuned for an actual birthday post hopefully (fingers crossed) this weekend.

Day + 365 One year ago today!

2011-06-24T13:40:00.000-05:00

Daylon receiving the last of the bone marrow last year

The title pretty much explains it. One year ago today our sweet Caleb had a pop can worth of his bone marrow pulled out from him and place into Daylon. I can't believe it's been a year. In some ways, it seems like just yesterday but in other ways it seems like a life time ago. This has been the toughest year of our lives (especially for poor Daylon). I can't believe everything that's happened. I'm recapping this for you all: In this last year Daylon has not only undergone an intense regimen of chemo and a bone marrow transplant, but has had such severe mucositis that his airway swelled shut and coded, VOD a form of liver failure that causes kidney failure, then kidney failure, a brain bleed which caused a series of seizures one of which was so long, it more than likely caused a second brain bleed which shows as a stroke and caused severe brain damage to about 70% of his brain. His brain stem malfunctioned for a couple weeks and told his heart to shut down. Signed a "Do Not Resuscitate" order. He's had a couple dozen blood infections, a couple dozen skin infections, mucusitis of the gut that lasted for apprx. 8 months and caused severe vomiting . The vomiting and an unknowing respiratory therapist ripped apart his mouth resulting in 2 surgeries to repair the damages. A third head bleed, followed by 3 burr holes drilled into his skull. Then malnutrition to the point of electrolyte deficiency and possible death. I have been told by countless, countless doctors that a healthy adult could not have survived his medical history, more or less an infant with a deadly disease. He did though. There is no scientific reason to support why he has. No scientific reason to explain why he can breathe on his own, not to mention play or problem solve. Since his birth, we have been told over and over the same line, "I'm sorry, but your son will not survive." Do you have any idea how much I hate being called into a conference with a doctor now? The thing is, they've been wrong. He's survived. He's a fighter and one of my heroes. No matter what's thrown at him, it may knock him down, but it doesn't knock him out. I feel so blessed to live my life and get to watch miracles unfold daily. I know that the reason my son is alive is because of the hundreds of thousands of prayers on his behalf from those who love and care about him. Thank you for your prayers. Thank you for raising awareness of EB. I hear all the time about Bible groups that are praying for him, people who've put his name on Temple Prayer Rolls, fasts that have occurred on his behalf by entire congregations or individual people, people who put him on their list for Mass, book clubs that pray, co-workers that pray, children that mention his name in their precious prayers, the list goes on and on. We are so thankful and so touched that all of your are standing beside us in this journey.
As you all know, the transplant has worked and it's been absolutely amazing how quickly it's worked. We're hopeful that several years down the road Daylon's life with EB will be a memory. Daylon's personalty shines through each day now and we see more and more of a happy, healthy little boy. He's also up to 23 lbs, which is heaven! Just 7 1/2 lbs more to go! Thank you all again!

LDS Mom to Many: Grandma's 84th Birthday Cake

2011-06-20T11:54:00.000-05:00

LDS Mom to Many: Grandma's 84th Birthday Cake
Beautiful cake and such a cute lady!

A new man

2011-06-12T12:21:00.000-05:00

I can't even hardly believe how great Daylon's days have been going. I don't know if it's getting enough to eat, the right antibiotics fighting off the pesky bugs that have been lurking in his system, or what, but Daylon's personality pre-transplant has been back and he's happier than ever! I just love it!!! He's smiling ALL THE TIME!! He's doing these deep little belly laughs that I haven't heard in about a year, he's started talking a little more, he's playing with toys, heck! He's even letting us put him on the ground to play with having a total meltdown. I can pee in peace! Aaaaaaaaaaa (That's the choir singing)! Okay, and get this. He has actually started hugging!! Real, honest to goodness hugging. Before if you asked for a hug he would just rest his head on your shoulder, now without even being asked, he'll open his arms up wide and give you just the cheesiest grin, hug super tight and rest his little head against your shoulder. It melts my heart. =)
I will say though, with Daylon being so much more alert, giving him his injections of Epigen have become much more difficult. He used to just fuss for a second and then go back to his listless self, but now he fights and cries. He just looks at me with his little quivering lip with the facial expression of, "How could you". Oh, how I hate poking him with needles. The lack of fat on his legs, doesn't help either.
Back to the good news...
The blood work has come back from his One Year Check up and (drum roll please!) Daylon T cells are 100% donor and his C3 cells are 99% donor!! Yay!! At his 6 months labs, he was only 70-something % donor and we were becoming concerned that he was losing his engraftement, so this is GREAT news!! Still no word on his skin biopsies, but we're anxiously awaiting the email!
At this weeks BMT appointment, Dr. Buchbinder said that he feels Daylon's check ups can be moved to every other week! I'm so excited to get two of my Wednesdays a month back! It's such a pain to load everyone up, travel over an hour (sometimes several in traffic, especially coming home), and worry about the five of them touching stuff in that germy clinic. They have babies with RSV, BMT kids, pulmonary kids, everyone, all lumped together in the same waiting room. One word: GERMS. So glad to get a break! Oh, I almost forgot! The reason Dr. Buchbinder feels he doesn't need to be monitored so closely by BMT? He's gained almost a whole kg (2.2lbs) since surgery! Well, that's about it for the news on this end. Hope you all are doing well. Thank you for your love, support and so many prayers! We couldn't ask for more. :)

in the hospital

yesterday

We're home!

2011-06-07T13:06:00.000-05:00

Shortly after I posted last Daylon's blood pressure slowly began to drop and within a couple of hours was in a healthy range. He held great pressures over 15 hours and Daylon was released from the hospital Sunday night! We were able to make our flights for first thing Monday morning! Woo-hoo! As usual, the trip was stressful and frazzling. This time they even patted down Daylon. Having his tummy patted a few days after surgery resulted in many tears. Plus, to save money, Brian flew with a different airline and landed at a different airport (note to self: not worth it), leaving me to carry Daylon in a blanket with his long feeding tube, his little backpack with the machine, the diaper bag, camera bag and the car seat all the way back to the VERY. LAST. ROW. of the airplane. Did I mention that in the process I managed to get his feeding tube caught on arm rests three different times and only knew when I had walked far enough away from the armrest that it was caught on that Daylon yelled out. By the time I got to our seats I was ready to cry along with him. One word: Nightmare. Anyway, after a long day and a good night's rest, we're home! We go to clinic tomorrow (and every few days for a while) to make sure that his blood pressure is under control. Today we're just spending it trying to get back into the swing of things. We'll keep you all updated as we know more!
Thank you for your prayers! I know that Daylon has made over obstacle after obstacle because he has so many wonderful people praying for him. Thank you! Thank you! Thank you!

At the hospital stay continues...

2011-06-04T10:46:00.000-05:00

Welp, we're still sitting pretty in the hospital. Unfortunately.

Daylon blood pressure has been in the high 150s/110-ish since surgery. This is obviously high for an adult, more or less a 22 month old. He's on four different blood pressure meds without seeing much difference. The renal team was called up to bat again to help with Daylon's care since the kidneys control blood pressure. An ultrasound of his kidneys was done and it showed that Daylon's kidneys are shrinking. As he gets older, he will quickly outgrow his kidneys (especially if they keep shrinking) and he'll need a kidney transplant. You know that sick feeling in the pit of your stomach? Yeah. I've got that. I am praying, praying that by some miracle something happens and this all goes away, but I know that sometimes these things happen. I just feel so horrible for out little guy. This poor kid has experienced so many bad things. Anyway, they've upgraded (I"m not sure that's the right word) his renal condition from acute to chronic, meaning permanent. The PICU doctors have also been called over to our team again. Hopefully with everyone's help, Daylon's blood pressure can be managed and under control before he has another stroke.

new hospital rooms. Every room in the hospital is identical

The culture from his lungs came back growing a stubborn bacteria that causes pneumonia. Because he's been off and on antibiotics for months, it's probably helped him from actually getting really sick. He's on a new aggressive antibiotic for that.

each room has a 60 inch tv. There are 6 BMT rooms with this big tv and then two small tvs off to the side of it (I have no clue why) and a fourth tv hidden in a pull out wall attached to the bed.

The culture on his foot came back growing 3 different forms of bacteria. One was staph, another one is some belly bacteria (I have no clue how that is growing on his foot) and the third is a really rare bacteria that I'm told is not normally seen in this hospital. I can' t remember the name, sorry. Anyway, he's on another oral antibiotic for his foot and we're supposed to continue with the bactraban.

At the one year check up they check for a slew of disease and various other illnesses and Daylon's labs came back positive for Hepatitis C. They ordered a recheck and the machine malfunctioned on the results, so a third was taken yesterday. We should get that back tomorrow. If he does in fact have hep C it's probably from a blood product he received. I'm still hopefully that this is all just a mistake.

The good news is: Brian's here! Yay!

Plus, Daylon had a neuro psych evaluation yesterday and they said that overall, his abilities register at about 13 months. That's great! I was actually thinking that it was closer to 8 months or so. His gross motor is way behind for his age, but his foot has given him constant trouble his whole life, which would prevent him from walking. His fine motor skill and problem solving skill are almost age appropriate and for me that's HUGE! It shows that the brain damage is being repaired and that he's thinking close to like a kid his age. They also said that with what he understands of language and the babble that he's able to make, his speech may be delayed, but it is coming! Woo-hoo! We're beside ourselves with this news! Now, we just need to make him healthier!

This trip has been a lot harder than we anticipated. I was so excited to get his nutrition under control and now there's several new worries to take its place. Daylon is such a brave little guy. He is poked several times a day and he doesn't fight it. He gets test and procedures done and as long as we're close he's okay. Don't get me wrong, he fusses a bit, but he doesn't scream and fight the way I would have at his age. He's such a fighter and I love him so much.

In the hotel the day before surgery

Sometimes, Daylon reminds me of an little old man filled with wisdom. These expressions are why. He sits like this all the time! It cracks me up!

Out of surgery

2011-06-01T16:19:00.000-05:00

Wow, what a morning.

Okay, so this is going to be pictureless and short, but I don't want to keep you all waiting...

Eye exam- there is some permenant scaring, but he still has his vision

GI scope- got as far as the esophagus...once she saw that it had a tear, she backed out. He will have another scope down through his g-tube in about 4 months when the site has had a chance to fully heal.

Respiratory scope- He ended up needing to be intubated so they couldn't see the airways (they go through the ET tube), but they said his lungs looked pretty good considering everything he's been through. There was a thick film covering them so they took some cultures. The doctor said he had no clue what it was, but he's testing for everything. First results should be in by tonight with the last of the results in in a couple of weeks.

G-tube- Overall, it went nicely. There was a lot of excess scarring on and around his stomach but they added a third hole and cut it back.

Biopsies were taken from his hip. Dr. Tolar was shocked at how beautiful his skin looks, but was disappointed to see how skinny he is. He said he is quote, "He's beyond skinny. It should never have gone this far." . He agreed with me that his foot is infected and took a culture from it. I think I forgot to mention this last post, but last weekend Daylon's foot was hurt and the skin just came right off. He never blisters anymore. When it comes off, it just poof! Comes off. Anyway, it's one big mess and it started to get really stinky and red. I tried the usual bleach baths, silver ointments, etc. but they were no help. His immune system is just shot (between BMT and malnutrition) so infections seem to flock to him.

Okay. So that about covers it. His room is super fancy and state of the art here in the new hospital. I kind of miss the homey atmosphere though. Oh, well. We're having fun catching up with all our old nurse and dr. friends. Brian comes in tomorrow (for our portion of the genetic testing)!! I can't wait!

I'll try to post more later.

We're baaa-ack!

2011-06-01T09:07:00.000-05:00

I hope everyone had a happy and safe Memorial Day. We had a crazy weekend of rushing, running errands and having fun. On Sunday though, it was all cut short for Daylon and I as we flew from LAX to Minneapolis/St. Paul Airport. We got in Sunday day night and settled into our hotel (the RMH is SUPER booked :( ). We're staying in north Minneapolis about 10 miles from the hospital and downtown. The hotel is pretty nice. It's small, but that's okay since it's just the two of us. Way to go priceline.com! I've really missed Minnesota and it's so nice to be back. It is L-U-S-H up here! It's so beautiful and green. I just love the atmosphere. The only thing that would make it better is if Brian and the kids were here. I'm the kind of girl who has not one but two gift certificates to her favorite salon and has yet to go because that would mean leaving her husband and kids for a couple hours. I know it's pathetic but I miss them.
Moving on... =D
Daylon's schedule was packed today. We had lab draws at the new hospital (which is sooooo stinkin' nice, by-the-way!!) and his veins refused to co-operate. After several pricks which resulted in a few drops of blood each (not to mention an hour of everyones time), we ended up in Peds vascular where a screaming Daylon was held down and a ultrasound and little shunt were used to fill up the 15 viles they needed. Poor baby. By the end he had had it and I don't blame him a bit. There aren't many one year olds who will let you poke 'em and keep on playing with Cookie Monster, but he did...initially.
Afterwards, we went to see Dr. Saltzman (his surgeon) who was so happy to see how well Daylon was doing. He kept going on about how great his skin looked and how he was so much more coherent today than the last time he saw him. That really made me happy to hear. Too many cruddy days lately. Anyway, he informed me that he's doing the surgery laparoscopically through his belly button. While he's in there, he's going to fix Daylon's hernia as well, so that's good.
Next was Pulmonary, Dr. Regelmann. He said that Daylon's breathing is definitely labored and that his lungs are unclear with diminished breathing. Daylon chokes when he drinks his bottle, wheezes, can't sleep more than a few hours without coughing fits and coughs so hard several times a week that he vomits. It's pretty rough. Something is obviously wrong, but they're not sure if it's JEB related or if it's a nasty bug that's refusing to leave with antibiotics or if it's damage from the BMT. The only was to know for sure is to do a bronchial scope but the risk of that is that he could likely bleed in his lungs. If they leave it as is and it is a bug, he could possibly become fatally ill. Rock, meet Hard Place. I signed the consent and Dr. Tolar is going to talk it over with him and they'll decide what to do. Brian and I aren't as educated in these areas as they are and we have faith in them and know that they have Daylon best interest in mind.
Last, he met with Dr. Erickson who is the GI doc. She showed me Daylon's growth chart. It was embarrassing. Part of me knows that I've tried my hardest to help him and I shouldn't feel guilty, but I can't help it. I do. His weight is not only not on the growth chart for his age, it's like an inch below it. He hasn't grown length wise since November and he's now in the 75%, whereas he wasn't on the chart (really tall) before. We talked about oral feeding and talking and how once he starts eating orally, she thinks he'll start talking. She said that once he gets nutrition in him, his cells will "wake up" and his brain will tell him to start putting things in his mouth to feed the "machine". Nutrition also means more energy with (hopefully) more of a desire to play and walk, a chance for his brain/intelligence to develop and his kidneys to improve. Her goal is to have him at the 50% in weight within 3 months, fully healthy (where his body has replaced what's been taken from other places IE: his bones) by one year. Ultimately, she would like to see his height back above the curve for his age and his weight around the 75%. Hopefully, it's nothing more than an oral aversion which she said, she thinks he'll outgrow around three yrs old.
His time in the OR will be about four hours. That's a long time to be out without needing to be intubated. I would be lying if I said I wasn't nervous. He's going to have the g-tube placed, the GI scope, an eye exam to see how bad the permanent damage is from his corneal abrasions, his one year biopsies and possibly the lungs and airways scoped.
Well, that's all I've got for now. I need to start getting things ready for tomorrow. We have to be at the hospital at 5:30am and it's across town. Booo! :) I love sleep. Oh, how I miss it.
He'll be admitted after surgery so I can try to blog more tomorrow. Please pray for our little man. Thank you all for your support!!

The Internet was SUPER slow at the hotel and I wanted to post pictures along with the text, so I waited to post this. Big mistake because I fell asleep! Anyway, I'm at the hospital now. Daylon went back at 8am and everything was set up. So far, only the eye dr. has come out to say that there is permanent scaring on his eyes, but they are still working. That was such a relief! Let you all know more later...
Jennifer

Minnesota update!

2011-05-21T12:37:00.001-05:00

I got the call last night at 6pm from Greater Newport Physicians and the woman said that she wanted to let us know before the weekend that Daylon was (finally!) approved!! We are soooo glad! Daylon's down to 9kg and his respiratory issues are becoming well, more of an issue. We owe a HUGE thanks to the team in Minnesota, especially Beth and to Dr. Tolar and Dr. Buchbinder (BMT dr at CHOC) for writing letters and making calls to convince the insurance company to approve the surgery in Minnesota. I'll try to post more this weekend including some pictures. Well, it's off to Bella's Bash! Have a great weekend!

What are you doing next weekend?....

2011-05-12T10:16:00.000-05:00

...for us, (assuming we're not in Minnesota) we'll be attending Bella's Birthday bash.

I just wanted to update all of you So. Cal. readers on Daylon's friend, Bella birthday party. I'm sure that most of you remember me writing often about Bella and the rest of the Ringgold family when we were in Minnesota. Bella was 6 weeks older than Daylon and had her transplant 8 days after him. They went through the ups and downs of chemo and transplant together and lived just 2 doors apart in the PICU. We obviously grew very close with the Ringgold family. Unfortunately, 101 days after her transplant Bella passed away. She would be 2 years old this month. In honor of her memory, the Ringgold family (and many others) are hosting a Birthday party/fundraiser with food, games, crafts, etc. All proceeds raised from the event will go directly to the P.U.C.K. organization. P.U.C.K. or Pioneering Unique Cures for Kids, is a great non-profit organization that is working with Dr. Tolar and Dr. Wagner to help fund their research while they work on a cure for EB and two other rare, but fatal genetic diseases (click on the word "P.U.C.K." to find out more). I had a conversation with Dr. Tolar when we were up in MN in Feb. about the research he is doing. The hope is that if they are able to receive enough funding to finish their research, then he would be able to pinpoint the exact stem cell linked to the form of EB that the patient has and the amount of chemo given could be less than it is now. Afterall, it is because of the affects of the chemo on the body that Bella, Elle and Sara (the daughter of the founders of P.U.C.K. and the first baby to die from transplant) have passed away and it's the reason for all of the troubles that Daylon has gone through from multi organ failure to eventually brain damage. Raising money for this cause is especially important to me of because as of right now, Daylon is the only baby to have gone through transplant and live...and we all know what kind of road he's had to travel to get there. That's a big problem for all of the other Junctional Herlitz kids out there. Since the life expectancy for these kids is less than a year, transplant obviously has to occur in infancy.
If you're in the Orange County area on the 21st, you may what to consider stopping by the party. You have to eat anyway, right? You can grab some yummy food, play an activity with your kiddos and all while supporting a great cause. I'll right. I'm done yapping. I don't want to make it feel like a high pressure sale. :) Ha, ha!
Here's the info:

Oh! PS- Still no news on when we'll be in Minnesota. We'll keep you posted.

To my baby boy

2011-05-11T03:04:00.001-05:00

Dear Daylon,

It will be a year this week that we arrived in Minnesota for your Bone Marrow Transplant. We were all so excited and so scared for what this opportunity might bring to your life. Your big brother Caleb was the proudest 3 year old I've ever seen. He would tell anyone (from the mailman to the doctors) the same line: "My name is Caleb and I'm three years old and this is my brother 'Dane-nan'. I'm going to be his donor transplant and makes his boo-boos go away!". To this day, he loves to brag that he has "Strongman cells" and now you have them too. Your skin looks so beautiful. Today after dinner when I lifted you from your highchair you snuggled your face in between my shoulder and my neck and my heart said a prayer of gratitude. Your life is so different now. You still love to cuddle up with a blanket, but now the blanket is over us and not separating us. Flying in the air with Daddy like the other kids is something we never thought you'd know and I actually remember crying about it. Now we know that it's your favorite way to play. Although you are still not quite as healthy as we wish you were, my heart is full to know that you aren't in constant pain.
This morning as I was unpacking, I came across a poem I had written one night when you were only a few months old. At that time, there was no hope given to you as the transplant program was not open to all severe forms of EB. It was the hardest thing in the world to rock you to sleep every night knowing that you would return home to our Father in Heaven before I could get a chance to see you grow. On this particular night, I had given you an especially painful bath and dressed you in your bandages . Your skin was very broken down and raw and you lost more blood than usual. As with most nights back then, I began to feel a little panicked that you would be taken from this earth within a very short period of time. After all the dressings were on and you were gooped up with Aquaphor, I wrapped you up in your big fluffy blanket and sang to you to try to calm you down. Your little head was all I could see through the heap and as I watched you fall asleep, a flood of emotions overcame me. Mostly, I just felt the blessing of being your mother and the mother to your four siblings. I grabbed a pen that was resting near my rocker and the words just spilled out on the paper.

Daylon

Watching you sleep peacefully in my arms tonight,

Wondering if we're ever gonna win the fight

I'd give anything to know how to make everything alright

and turn all this darkness into something bright.

Sweet little boy of mine,

I wish I could stop the hands of time.

In this moment while you sleep, everything is fine

and I'm gonna lock it away in my heart for all time.

I wish for you a life where you could cuddle, crawl and play

And never have to shield yourself from the sun's golden rays.

Pain and agony would never consume you as you lay,

helplessly waiting for the light of a new day.

Sweet little boy of mine,

I wish I could stop the hands of time.

In this moment while you sleep, everything is fine

and I'm gonna lock it away in my heart for all time.

One day it will come, that you'll be EB free,

and all the sorrow and suffering will flee.

Then I'll kiss you and tickle you as you giggle with glee!

My son, I'm so glad we can be together for eternity!

I love you, my Sweet Boy.

Love,

Mommy

long time gone

2011-05-04T02:22:00.001-05:00

Hey Everyone,
I'm sorry it's been so long since my last post. Life has been a whirlwind and at the end of my day (around 2 am) the thought of sitting down and processing my thoughts so I can blog about life, is unappealing to be perfectly honest. For me, sometimes it's best to just plow right through and think about stuff later. Not the most grown up of tactics, but it works. :)

Daylon's weight has continued to be a big concern. He weighed in this week at 10.3 kg. Last week he was up a smidgen but it may have been his clothes. He's eating pretty well and is willing to try some table food even. His weight has just continued to drop for no known reason. If I saw him from off the street I would guess that he has failure to thrive. His mood has been going between depression and fussy for months. He quit talking, laughing, smiling, playing, or showing interest in anything but being held. Even when he's being held, he's still fussing. It's been emotionally trying for both Brian and I to watch him suffer for and not have a clue what to do. We've really been praying hard for him this last week and we have started to see an improvement. He smiled a couple of times this week and even laughed once yesterday. Starting this last weekend he would pick up an item or toy and sometimes actually look like he was playing. The improvement in his personality has meant the world to us. Now if only he would gain weight....

We saw Dr. Grant (GI specialist) last week to come up with a plan for Daylon's nutritional needs. Daylon's labs have improved some but his electrolytes need some serious improvement to keep Daylon alive. The doctors don't feel that another g-tube or PIC line are a good idea for Daylon. The trouble Daylon has had in the past with the g-tube was really concerning for Dr. Grant. Apparently, he even yelled at the surgeon while we were away in MN. I had no clue that he took it so personally, but I've got to say, I'm grateful he did. I know it will insure better care for Daylon in the future. What he ultimately decided was that he would give Daylon one month to put on weight on his own (since he's starting to eat) and in the meantime, he'll consult all of the doctors on Daylon's team and come up with a plan that everyone feels comfortable with. with have 3 weeks left, so I hope we start to see some improvement soon.

Okay, so one last area in Daylon's life has been a bit rough: Respiratory. Daylon got a cold just before being admitted into the hospital and he developed a cough. He still has the cough. We all got the cold and I will say, it was a bugger of a cold with a lingering cough, but it's gone to new heights with Daylon. It's to the point that he coughs the ENTIRE time he drinks from his bottle, all through the night he has a hard time coughing and breathing and now he's wheezing and coughing almost constantly. Seriously. For example, this morning he coughed (or had a series of coughs) every minute until noon. He can hardly catch his breath. We went to the BMT clinic yesterday and they were obviously concerned to see how his health has declined even in this last week. Daylon had a cough and a horrible wheeze from the time he was 3 weeks old. The problem was that he would cry or cough and then blister and then scar and stricken his airway. We decided that a trach was something we were going to pass on (we didn't think his skin could tolerate the incision and constant irritation) so when he had a growth spurt and his breathing eased up some, we were thrilled! I mean, before you could hear him breathe from across the room and he was always a little grayish. He's not that bad right now, but it's definitely becoming more and more of an issue. It could also be that he continues to lose weight despite eating again because of his body's increase in caloric needs due to the blistering airway. I'll let you know more as we learn more.

This is his Easter outfit. He still can't go to church, so he wore it to Saturdays Easter dinner at Grandma and Papa DLC's house with the Fraze family

To add to the chaos, we've moved to Lake Elsinore! Adding in unpacking and setting up the house to our normal schedule has had us going non stop (hence the 2am bedtime this last month). Keira is still attending school in Corona, so it's been an additional pain in the tuccus (I think that's how you spell it) to get her up and ready bright and early so she can make the trip to the 91fwy on Daddy's way to work. I am so thankful that my mom has offered to take Keira to school on Brian's early days and pick her up when it gets out in the afternoon. I will say though, Keira is lovin' all this quality time with Daddy and Grandma and Papa.
Oh! I almost forgot! My parents, Brian and I were asked to speak at a fireside/church event for our ward/congregation about the miracles we've seen in Daylon's life. Brian spoke about the disease and life before transplant, my mom spoke about the fundraiser and walk-a-thon last May, I talked about the events in Minnesota to current time and my dad spoke on "Prayer". It was such an honor to be able to share with others how our life has been touched and influenced by prayer and the hand of God. I feel so blessed to have experienced this life and to have seen miracle after miracle first hand. Through the trials we have had, we have grown closer to God and closer as a family. I am a better wife, mother, daughter and sister for it.

I was interrupted when I wrote the above a couple of days ago and never posted it. I've decided just to add on from there. Anyway, we just found out today that Daylon will need to return to Minnesota as soon as the insurance approves it. The doctors up there are taking over Daylon's care just for a week or so (I think) to get things back on tract. He is having a g-tube put in again and the surgeon, GI and anesthesia have all been contacted. Minnesota is the best place for Daylon to have surgery for the following reasons: 1. so they can attempt to NOT intubate him, and 2. Dr. Saultzman has been the doctor to operate on Daylon repeatedly and has developed a stitch that last for a decent amount of time. For some reason, regardless of transplant, stitches still just slip right off Daylon while still in the OR. Dr. Tolar also wants Daylon's lungs and airways tested by their Pulmonary team to see where he's at with all that.
Oh, here's what Daylon looks like these days...

his skin is awesome but he looks like he belongs in some commercial about starving kids in Africa.

I will update again when we have official dates. Thanks so much for your love and support. I'm sorry to make you all wait.

update

2011-04-05T12:41:00.000-05:00

I just wanted to quickly let you all know that Daylon was able to leave the hospital. Yay! He's still not acting like himself but he has moments throughout the day where he'll take interest in a toy or maybe even smile. I'm hoping that we'll start to see an even bigger improvement in the coming days. He's FINALLY able to open his eyes again for a few moments at a time. Now that I can actually see it, his eyeball isn't in the best shape....well, it hasn't been for the last year, but it's really a mess right now. As far as feeding, he's back down again and I think he's lost more weight. Yesterday, I broke his kidney diet and gave him a few bites of a milkshake. I promised shakes to the kids when we came back from our hike and he just sat there in his chair staring at me with puppy dog eyes. I caved. I was so happy to have him eat calories, I figured the extra protein would be worth it. I've gotta run. We've got Spring Break (Woo-hoo!) going on here with the kids. More later....

hospital update

2011-03-30T18:27:00.000-05:00

Daylon is still in the hospital. Dr. Tolar has gotten involved in his care here at CHOC and they've run additional tests to check for infections in other areas to go along with the blood infection. So far, chest x ray= no pneumonia, echocardiogram= blood infection has not spread to his heart, no RSV, no MRSA, along with no other signs of half a dozen other problems. They drew blood from his arm again yesterday and that came back negative (so far) for bacteria so it looks like the blood infection may be clearing up, however, his Hickman is test positive faster than ever. His temp is up to 104.7 yesterday and after two fever reducers dropped to 102.5 an 1 1/2 hrs later. Meanwhile, I'm about to have a nervous breakdown from the stress of the infection and possibility of losing Daylon and the fear of being here and the continual harm that occurs to him. We got Tanya Kamka (a NICU nurse who took an interest in Daylon and Bella and is trying to raise EB awareness within the hospital) to come down and pass out the information she gathered on the disease. I think that the more people are reading over it, the more they understand that this disease isn't a "rash" as they've been calling it. Please pray for Daylon that he'll get better soon and we can go home. We miss the other kiddos too. His four siblings chaos always perks him up. :)

to answer someone's question from the last post: When the staff here has hurt him, do they apologize. Honestly, mostly they come up with reasons why they had to do what they did and don't apologize. However, there have been a few that do.

I wrote the above yesterday....

This is from last night...

Two nights ago a nurse tugged too hard on Daylon's line and pulled the cuff on his line from under his skin, through the skin. There was screaming by Daylon and ~~yelling~~ stern talking to by me. Well tonight, Daylon was sleeping and his IV alarm started beeping. His nurse came in to check it. I figured the syringe was empty and listening to Caleb talking away on the phone. When she started checking the line for air, I lifted his shirt to check for a kink in the line and saw that his Hickman had fallen out!!! Normally there would be some stitches to close the hole, but since his skin still can't hold a stitch, they passed on it. I held pressure for 20 minutes or so and then dressed it with sterile bandages. We'll see what the doctors say tomorrow.

TODAY...
Daylon woke up feeling better and for the first time since Saturday, played with toys. I even got to see tinsy crackes of his eyeball a couple times today. It was only for a half a second, but I was so happy! This morning, as Brian was gettting ready to leave the room for work, Daylon let out a playful yell and was smiling in his sleep. I was so excited to hear about that! TA-DUM! Improvement!

Talking to Daddy on the phone after breakfast

More good news? Ok.
Dr. Buchbinder is back (Hooray!!) and taking control of the whole lack of EB knowledge thing. He was really disappointed to hear what has gone on (he was out of town) and is fixing it. He spoke with infectious disease and they decided to get Daylon on oral antibiotics and not risk another surgery putting a new line in. His wants to get Daylon out of the hospital ASAP and away from blood pressure cuffs, twice a day complete body scans (which are wrecking his foot), thermometers, well intended nurses, etc. As long as he can go 24 hours w/o a fever (last one was 3am last night) he can fly the coup tomorrow! Yay!!

When Daddy came by on his lunch break, Daylon was so happy he even did his little happy dance and gave a great big cuddly hug!

He will be SO much happier at home! Heck, I'll be happier to be home! My neck and back are killing me from these stupid chair beds plus I miss my kids like crazy! I'm acting like a pregnant woman over here (no offense, pregnant moms =D ), crying everytime I talk to them...or pathetically...even when I hear stories about what they've done this week. I've got to get it together over here! LOL!
You know that moment when you're with all your kids and your spouse you're just sitting around talking? I love that moment.

Ahhhhhhhh!

2011-03-28T18:23:00.000-05:00

Is the title a bit dramatic? Yes. But that's how I feel. Daylon's week was going pretty good. He started to pull up on his hands and knees, with assistance he started standing for about a second and a half, he continued to eat well (although he's still not gaining weight) and by some miracle, he was actually retaining his vocabulary! Since all his head issues, he's not been able to say more than 3 words at any one time. Overall, he's learned (and relearned) about 20 different words (to the point that he says them often throughout at least one day) but short term memory isn't his strong point and they slip away. Right now he says: Mama, Mom, Dada, bye, ball, dog, up above (for twinkle, twinkle little star), out, go and more. It's obviously not a great list for a 20 month old but he's not just any 20 month old. This is GREAT for him.

The only bummer about the week, was that last Sunday he started up with a clear runny nose and a cough. On Wednesday we went to his Kidney appt. where we continued to get the "green light" for no more dialysis and then to OPI (Outpatient Infusion Center) for his weekly BMT visit. The BMT appt was supposed to be a quick 15 minute appt. Just some labs drawn, Epigen injection into his Hickman and a visit with one of the BMT docs. OPI isn't used to seeing such large Hickman and after a ton (when I say ton, I mean a super ton) of drama we left 4 hours later. Daylon spent about 2 hours of that time with blood stagnant in his lines while we waited for pharmacy to bring up the right dose of Heparin and someone from Dialysis to come over to put the Heparin in his line since the regular nurses aren't allowed. On Thursday Daylon started running a low grade fever and vomiting which I didn't think was a huge deal since Keira and Caleb had already had a 48 hour bug which involved the same symptoms. We needed the flu to leave Daylon and not run it's course on anyone else by Friday because my Dad had planned a weekend trip to San Diego for all us and some of us could really use a vacation. By Friday night, he was acting better so we figured he was on the down side of the flu. I called the BMT doc that was on and asked if she thought we should come in and she said no. Every person at home with the exception of my dad had the runny nose and cough that Daylon first got on Sun. It's one of those lingering germs. Ugh. Although no one felt 100%, we weren't horrible (plus we were planning on hanging out in the room for a good portion of the time) so we went to San Diego.

Here's a picture of my mom in San Deigo. I wasn't able to grab a whole lot of pictures in the 12 hours we were there since we were sleeping 8 of those hours. :) The suite was a beauty though. Brian and I shared the loft with Daylon.

Late Friday night, Daylon's fever was back and he was vomiting. Saturday morning the fever was gone and by late morning it was back (103 F) and so was the vomiting and diarrhea. Brian and I had to drop out of the vacation and drive back to take Daylon to CHOC.

Playing peek-a-boo with a wet rag to drop his fever before we left for CHOC

This is where the "Ahhhhh!" comes into play.
When we got to the ER Daylon's was fever-free and sitting up playing with toys. Isn't that always the way? The took several blood samples for cultures and labs and a urine sample then admitted him to be observed. We went upstairs to the cancer floor and we're met by the admitting crew. There was the pharmacist, 2 residents (kids fresh from medical school. CHOC is a learning hospital), the nurse and the nurses assistant. They asked for Daylon to lay on the bed to be measured. I'm turned, answering the pharmacists questions when out of the corner of my eye, I see the nurse tug Daylon's sock off and Brian and I both yelled "no!". We gently took his sock off and peeled back his bandages so they could see his feet. While we're doing that, that resident decided to look into Daylon's eyes. I turn to see her holding up his eyelid and pulling on the bottom of his eye. It was too late. The damage was done. Daylon got a corneal abrasion, a FAT blister under his eyelid and one on the bottom rim of his eye. His eye is so swollen his eye sticks out further than his brow bone. The underside of his eyelid is actually puffed up to the point that his eyelashes run across the middle of his eyelid. I'm sorry, to say it, but that really ticks me off. He was screaming and I'm trying to explain to a flippant doctor that we really have to be careful with him when the nurse turns him onto his side by grabbing his back and side with rubber gloves. I try to take him from her but she shoos my hands away because they need to check for a rash or abuse. Thankfully it was over in a matter of seconds but he now has two fingerprint sized blisters on his back.

One of the hardest things post-transplant is getting people to believe he's got a serious disease. Before, they would see him in his bandages, always bleeding from some place and people knew he was sick and fragile. Now, he's scabbing up which is great, but makes him look like he's getting over the chicken pox instead of EB. His skin looks pretty good (except his right foot) for the most part but we work hard to keep it that way. He still gets lathered up in Aquaphor and plays on memory foam and sheepskin rugs. His eyes, mouth and insides are almost what they were from before transplant, but no one gets that.
Saturday night, Daylon cried and fussed most of the night from the pain (although I think part of it may have been his dislike for hospitals). I had fallen asleep in the chair and the nurse thought she should let me sleep and give Daylon his medicine herself (even though I asked her not to). I woke up to him screaming and her telling me that he's fine, she just scared him. When I turned on the light his lip was bloody from where she took off skin from being to rough with the syringe. We also found out the blood sample and urine sample from the ER came back contaminated so the night nurse had to do it again. Her sample came back contaminated as well. Her second sample actually made the cut. They had taken so much blood from him that he went from a 8.7 hemoglobin on Wed. to 6.2 on Sat. so he needed a blood transfusion.
Anyways, the first 24 hours, I felt like the nurses thought we were making up the disease but now that his skin and tissues are starting to brake down, they're slowing getting it. He has a bacteria infection in the red port of his Hickman. His cough is getting worse and worse and the more he coughs, the more his airways are blistering. They've started him up with breathing treatments again. I'm REALLY hoping to convince the doctor that Daylon is better off at home so we can leave today. I'll keep you posted.

Thanks for the vent session! I'll try to have my next post be a happier!
PS- Dr. just came in and said that an infection is growing in both ports of his Hickman--Staph Aureus. It's in his blood and now they need to run some tests to see if it's attaching his organs. Echocardiogram scheduled for later today and the rest tomorrow. I'll let you know what we find out. Oh! And, we have to stay several more days at the very least they said because it's a hard bacteria to kill. :(

Rough week and BIG NEWS!

2011-03-15T00:43:00.000-05:00

It's been a while since my last post. Sorry for the wait on a "Daylon Update".
So the good news is Daylon has been meeting his nutritional goals everyday this last week!! Yay! His weight is up to 11.45kg, so it's slow but steady. :) We are so grateful to have this worry begin to peel away. He's still not interested in anything by spoon but we're all about baby steps! We are also so grateful to have so many wonderful people praying for and thinking of Daylon everyday through this trial.

****************************************************************************

I wrote the paragraph above a few days ago.

March 13th-

     Daylon continues to eat through his squeeze bottles and I'm happy to announce another break through!
    Thursday night we were celebrating a birthday at home and I decided to set some cake on Daylon highchair tray to buy some time to serve up the kids a dish while Daylon "colored" with the frosting on his tray. About two minutes later I turn around and see this....

Holy smokes! We all just sat there laughing at this surprising little miracle. You know, it would be cake that finally break this stubborn guy. He is his mother's son. :) The cake was just the beginning. At almost every meal he will feed himself a bite or two of food that we on his tray. The trick is, he HAS TO do it himself or else he refuses. I think after the smoothies of avocado, butter and french vanilla flavored Suplena (kidney failure milk) he had lost all interest in eating food outside the realm of his formula. Whatever it was, I'm hoping that this is where he can finally lose the caption on the front page of his chart, "suffers from malnutrition".

~~~~~~~~~~~~~~~~

     Outside of eating, Daylon has had a really rough week and a half (resulting in a mama with no time to blog). The skin on his face and chest has been tearing like tissue paper. Although this may seem like a step back, the good news is that the sores are scabbing up fairly quickly. The bad news is that once they the scab, they itch and he scratches. Some of the sores are pretty deep and are a challenge to keep from becoming infected. A week ago Friday we went to clinic and Dr. Buchbinder and I talked for a while and decided that Daylon's hair needed to be cut off. The sores on the top of his head (on his scalp) are really deep and oozing quite a bit. The dampness from the puss (sorry, I think that's such a gross word) made his hair on the parameter of the open sores lay down and stick over the top of the sore. That area wasn't really able to heal up because of it and increased his risk of infections. The increasing number of bald spots helped to make the decision easier. :) I couldn't use an electric razor to shave his head so he's not completely bald but have such short hair certainly is helping the healing process.
   Daylon has been suffering with his eyes. Since the last post, just wants to be held and sung to ALL. DAY. LONG. With four other kids to tend to, it's been a real blessing to be staying with my parents on weeks like this week. Dialysis has been a full on nightmare at times. He's been too miserable to sit through 4 hours of sitting still. By the time we leave he has blood running into his eyes and fleshy patches on his forehead and chest. Two days ago he started opening his eyes more regularly and playing again. As long as we're close (like within a couple feet) he's okay to play for short periods of time throughout the day.
One cool bit of fun we had earlier this week is that Erin, Daylon's nurse from Minnesota came down for a visit! It was SO fun to see her! She is such a sweetheart! She is absolutely amazing with not just Daylon but all the kids. The kids remembered her so they wasted no time chatting it up and playing around. We are so excited to see her again this Summer!

He's awake, he just couldn't open his eyes on the day she visited.

***************************************************
March 14-

HUGE NEWS!!!!!!!

Daylon is done with dialysis!!!
We went in today so he could be dialyzed and the doctor was there waiting. The three Nephrologists feel that Daylon is no needs dialysis to sustain life. We will visit the clinic weekly for labs and if after a couple of months his creatinine and BUN have no increased than his Hickmann line will be removed! I can't WAIT to get that thing off him! I am overjoyed right now! I can't even tell you what a huge blessing this is! It has been so hard to go through the transplant and watch his disease improve but have the affects of the chemo ruin his life. It felt like he was suffering so much just to trade one problem for several others. It just feels like this ginormous weight has been lifted off our shoulders. As the doctor talked my eyes filled with tears of happiness that this day has finally come. His BUN and Creatinine are still elevated but his kidneys will probably never perform at 100% after the months of trauma that they've been through. He will still have to stay on his special renal diet (low minerals, especially potassium, and protein) for now, but some of his limitations may be lifted after time. I know that he has been blessed to over come obstacle after obstacle because he has so many wonderful people praying for him. Please continue to pray that his labs will stay down and he remain off dialysis.
We are thankful for all of your support! Go Daylon!

PS-
On Sat. my mother-in-law took our three girls and my niece Aleyna to a Disney Princess Tea Party in Norco. They had SUCH a blast! Check out these cuties!

Crazy skin

2011-02-25T14:15:00.000-06:00

Yesterday we had Mommy-Sons time since Caleb had a check up and Daylon dialysis.

First off, I need to say thank you to all of you who prayed for Daylon's appetite to improve and for the kids and I as we all headed off to dialysis together on Monday. The kids were absolute angels! I couldn't be prouder of them. They sat from 12pm until 5 pm, in their chairs and were so quiet and respectful of all the sick kids in the room. Like I said, I'm so proud! The nurses were so impressed that they gave each of the kids their own can of playdough. Nice, huh!

Over the past three days, Daylon's desire to eat has picked up. Yesterday, he drank 20 oz! I know it's still not very much, but at least we're seeing some improvement. :) I'm praying that he's intake will continue to climb everyday and he'll soon be eating enough to sustain himself. The doctors have decided to give him two weeks to improve to a healthy status, but if we don't see enough improvement then they'll start giving him TPN during dialysis to force some calories into him. Please keep the prayers coming!

Daylon has had insane Kramer hair the last several week, as you may have noticed. Everywhere we go, people comment on his quote, "Rock star hair". LOL! Yeah. That's not intentional! :) His scalp has been cracked and dry. It looks like the dry desert floor. Anyway, it obviously itches really badly, so he scratches his head and rips up the skin. He has a bunch of random bald spots and scabs as the end result. Because his scalp is either scaled or scabbed all over his head, his hair stands up on end. With Daylon's skin, the area around the breakdown is always extremely fragile and so it's really easy for the breakdown parameter to spread and spread. Just since my last post, the parameter has spread from his forehead, down his face. His upper chest has started to blister and tear too. His chest hasn't looked like this since before transplant, so that's a bummer. It's become a lot more difficult for me to get Daylon not to rub or scratch his sore skin. When this would happen pre-transplant, I would bundle him up in a blanket and hold him almost constantly for a few days to get his face to try to scab up but at 19 months, he's a lot harder to contain. It's all about being creative when it comes to parenting an EB kid since everything is off the books.

Outside of that, things have been going well. Daylon has been happier and smilier than he has been since his surgery, so that's always a treat for us.
Oh! Kind of funny story:
I put Daylon in his bouncer so I could sweep up the kitchen floor after breakfast. Five minutes later, Caleb came running in saying, "Mom! Something is wrong with Daylon! I think he's dead. Come see!" My heart fell to my feet and when I ran in I found this:

No worries. He was just that tired. It's rough playing . :) Sleeping with his forehead on little piano keys didn't help the blistering!
Hope you're all doing well. We're so grateful to have so many wonderful people rooting Daylon on in his journey.

Yesterday we got to see Dr. Blumberg his Pediatrician and Brooke his nurse. They have been such a HUGE part of our support group for Daylon and have helped us fight to get some many things covered by our insurance. We love them!

Day +200 and something...

2011-02-21T03:38:00.000-06:00

You know how they say that you can't miss something you've never known?

They're wrong.

Tell that to Daylon. Let me explain:

These days, I'm no longer worried about Daylon dying any time soon of EB. Instead, I'm worried about him dying of malnutrition. We are seriously at a cross in the road when it comes to his eating, only to find that there is no more road.

Really quickly, we're back from Minnesota. The recovery has gone great and his mouth never did get any blister in the hours following the surgery.

Okay, so back to the eating situation...Daylon is gradually dropping a tenth of a kg every four days which probably doesn't seem like a lot but it is. His dry weight (what he should weigh) is 31.24 pounds. He now weighs 23lbs. Did I mention he's over 3 feet long? Just looking at him, he looks okay because he has a bigger head but once you lift his shirt! Wow-wee. He is literally transparent skin and bones. Dr. Tolar was all smiles and playtime with Daylon until he lifted the blanket and then he just looked at me and said, "Oh, no. We've got to fix this."
I spoke with the nutritionist and got a recipe for pretty potent formula but the only problem is, Daylon is refusing to eat. Like clamped down, shaking his head from side to side, kind of refusing to eat. The last two days I've actually had to resort to pinning him down and syringing formula into his mouth when he screams. It's awful. Not to mention his poor skin isn't handling it either. He's been this way for the last 2 weeks or so and it's getting worse everyday. It's like he's just lost the desire to eat. I'm having flashbacks to the first several months of his life. Ugh.
The funny part about it is he does seem to show some interest in "real" food and drink though. I don't get it. He's NEVER had real food before. Pre-transplant over ripe bananas and egg noodles gave him a blistered and bloody mouth, so most foods were automatically out based on texture. Because his GI and urinary tract blistered so easily he couldn't have anything acidic (juices, tomato sauce, etc) or else he had blood in his diapers and a VERY upset tummy. Seriously, he has no clue what food taste like. Ha... and he wants it anyway. I would be willing to try it out, but ever since he woke up from the coma he has not been able to chew and has difficulty just swallowing and breathing at times. I tried giving him refried beans last night and he was willing to try it, but choked and gagged and then puked. He has the world's easiest gag reflex too, which isn't helping anything. I will say though that once the doctor added the third anti-nausea med, his everyday puking has gone way down.
Naturally, putting in a G-tube again would be the next step but he's no longer a candidate for a g-tube. They feel that his skin can't support the constant friction and the catheter and trauma that's caused by the tube being there will make his nausea worse. I gotta say, I think so too. The next step is to put in another PICC line and start him on TPN again. The reason the doctors have been trying to avoid that route is that TPN has significant side effects when on for an extended period. It's supposed to be a resolution that can last a couple weeks until nutrition picks up. Daylon's been on it for months. We'll see what the doctors say tomorrow, but I have a feeling that he'll have to go back to a PICC. I really don't know what else to do. I'm traumatizing my poor baby and he doesn't even want to be around me the last two days because I'm constantly trying to get him to eat. By the end of today; he was crying, I was crying and he had eaten 11 oz for the day. A far cry from the 34 oz minimum that the nutritionist set.
Please pray that Daylon will have the desire to eat and I will be able to think of a way to get him all the nutrition he needs to be healthy and quite frankly, live.
That's all for tonight. I'm mentally drained and I want to sleep. Tomorrow I have a 10 am appt in Irvine and then dialysis at 12 with all five kids in tote. I gotta say, I'm not looking forward to it. Oh well. At least we'll all be together. That's about 20 steps of improvement from last week and 1600 mile distance between me and my kiddos. Keira doesn't have school tomorrow either and that's a huge plus. Just looking for the lining. The blessing are always there, sometimes I just have to make myself look for them.

PS- We had some time before church. Pretend like we weren't surrounded by cars and houses. :) Here's how we entertained ourselves:

After looking at these pictures, I am reminded that I have so much to be grateful for.

Good Night.

Day +235- out of surgery

2011-02-14T18:25:00.000-06:00

The resident that was on the night Daylon coded all those months ago was a doctor named Brian. He helped us through the mess with chemo and his last night on was that horrible night. His rotation was up and he moved to a different unit. I've never forgotten the kindness he showed us during that awful time in our life. One day in particular has stuck in my mind. I was border lining a nervous breakdown and he came in for a "social call". I was a complete wreck when he came in the room and I felt so much better by the time he left. He treated Daylon like he was a person and not just a patient. Anyway, he was on call tonight and when he saw Daylon's name on the patient list, he came in to say "hi" and catch up. Camera phone pictures again...sorry guys.

This may be the worse picture I've ever taken of Daylon. His poor eyes give him such drama.

I want to thank you all for your prayers and thoughts of Daylon today. I wasn't the only one nervous about the surgery today. Turns out, all three doctors were on edge too. They brought in the anesthesiologist that has intubated and extubated Daylon in the past and we all went over the plan for surgery...and then we went over it again. The plan was to use Propofal through his Hickman and not intubate. Instead they would just use a hose of blow-by (oxygen blowing on you). Dr. Rimmel was going to cauterize and seal the tongue and they would use several Red Robinsons to grab the blood as it came to prevent him from aspirating on it. If they couldn't keep on top of it, then they would emergently intubate him. Dr. Tolar would be in the room the whole time over seeing Daylon and collecting the tissue at the end. Sounded good to me. I opted not to go into the OR this time. There was nothing for me to bandage, I made the pulse oximeter EB friendly during the pre-op evaluation, Daylon was wearing pants so blood pressure reads would be a breeze, they weren't going to use ECG leads and all of the doctors and nurses knew Daylon and had worked with us on several occasions. It's really hard for me to do, but there really isn't a reason for me to go. I'm trying to learn to loosen my EB mommy apron strings as Daylon gets better and better.
After about an hour in the lobby Dr. Tolar walked out to tell me that everything had gone PERFECTLY (of course, not without scarring me half to death. What doctor comes out of the OR shaking his head and looking at the ground? I introduced him to a new rule: make eye contact with the family and smile when you leave the OR and then you can shake your head all you want! LOL!)! Not to be braggy, but he said that Daylon amazes him and just jumps over one hurdle after another like it's nothing. He also said that he didn't cry or act scared while he just lied there waiting for them to get started. He said that he just looked around at everyone and babbled. That made me so happy to hear. I wondered the whole way down the hall if he was screaming and scared in that cold, bright room.

after surgery--looks good, right?! :)

Anyway, everything went so well that Dr. Rimmel said he could be released home (RMH) today. Dr. Tolar vetoed that idea, so we're still here. We're happily situated in a room on 5D. It's so nice to see everyone!
Some pictures of him "playing" after surgery:

lets pretend that he's wearing an adorable smile holding his Valentine Pooh ;)

Pooh is getting some smooches

Okay, no denying it. Daylon was less than thrilled after surgery. I'm not sure if he's screaming at the doll or going to eat it... Either way, it's not a good day to be Pooh. :)

Daylon did have an allergic reaction to one of the meds given to him in the OR so they knocked him out to keep him from scratching his skin off. We are seriously becoming limited on the pain meds he can receive.
Well, that's the news on this end. I let you know when we get the results back from the head CT he had this morning.

HAPPY VALENTINE'S DAY!

Day +234 -preparing to go under the knife

2011-02-13T23:50:00.001-06:00

earlier this week with his eyes open

...or the blowtorch. We're not really sure yet. I asked Dr. Tolar when I saw him on Friday if he knew how Dr. Rimmel was planning on removing the granuloma and he said he didn't know. In fact, he said he was the best ENT he has ever worked with and he trusts him completely, so he's not going to worry about it. How's that for a compliment? Granted Dr. Tolar the kind of guy who has a compliment for everyone, but still. It made me feel a little better about the situation. I do have to admit though that it didn't stop me from stressing about the surgery all weekend. I've got the whole butterfly in your stomach, can't sit still feeling. It's awful. Part of my paranoia (or at least that's what I hope it is), is that between having regular blistering and scarring from his airway, he has suffered some permanent damage from having such a horrible case of mucositis and being intubated for a prolong period. When they went in in December to intubate him the doctors hmmm-ed and haaaa-ed in the OR before telling me that the scaring was pretty bad and his vocal cords were fusing together. After the burr hole surgery he bled for about a week down his throat and vomited bright red blood. This time around, the want to do the surgery without intubating him. Normally, that would have me "woo-hoo"ing out loud, but this is a scary surgery to not intubate. The mouth is such a bloody place when aggravated and I know from daily experience with Daylon that it doesn't take much. There's a fairly good chance that all the blood will pool in the back of his throat and he could aspirate on it causing pneumonia. They granuloma covers most of his tongue, so there will be such a mess to deal with guaranteed. To add to everything else, I've had now three doctors tell me that it's more likely than not that the trauma from surgery will leave his mouth in bad condition resulting in further surgeries. I feel so horrible for our little man. No one can understand why Daylon's mouth is worse post transplant...and it was bad before! From what I'm told, the other patients mouths were one of the first places to spot improvement. Oh well. His skin is doing great, so we're very thankful for that. We'll just have to pray and wait that his mucous tissues and organs will eventually catch up. Dr. Tolar is going to run tests on the tissue removed and check it for Caleb's cells to try to get an understanding of what's going on with his mouth. I'm so glad we're up with such wonderful technology!

Daylon getting ready to turn in the pop-tops that some of our friends and family have saved from back home! Thanks guys!

I'm sorry to be such a downer. I've been stuck in our room at the RMH with the exception of Tues and Friday ALL DAY LONG. Daylon has been so fussy. He has every right to be. He's bored out of his mind (Mommy isn't as entertaining as 4 siblings) and his constant corneal abrasions have lead to a nasty infections in both his eyes again, which have lead to rubbing, which have lead to more abrasions. Vicious cycle. Oh!...and being the genius that I am, I left his glasses at home. They're kind of important when your kid is going blind. :) Did you know that a mother who takes care of a child with special needs loses 6 years off her life for every year she takes care of said kid. It's even higher if they have other children. Learned that tonight watching a documentary on PBS while I was waiting for Master Piece theater to start. That's bored I am...Well, truth be told, I actually do like the Pre-19 century, British aristocrat movies they have on from time to time... back to the rant :) I'm going nuts not having my kids drive me nuts. Funny how that works. I miss the madness. Looking at the Courtyard is when I miss them most. It's like a movie. I keep finding myself staring out the window and I can literally see them. I see them running through the sprinklers, I see them sliding down the giant caterpillar with Chloe (Elle's sister), I see Keira and Caleb pretend to go fishing off the bridge, I see the twins running around the porch of the playhouse, I see Brian rocking on the swing laughing. It's seriously like something out of a Lifetime drama. I think I'm going crazy. Either that or it's an aneurysm. :p
Okay, happy thoughts...
So, Dr. Tolar did give us some wonderful news on Friday. Check out this picture!
Control= Dr. Tolar's skin
DE= Daylon Edling and the number beside it is the number of days post transplant when the biopsy was taken.

The red line is what you need. In the middle picture Dr. Tolar explained that the dye picked up some of the collagen instead of laminin b/cwhen he ran the tests, there was nothing there. In person you can see the line is polka-dotted and kind of odd looking. In the picture on the right, the red comes in like a line. Look at it compared to the controlled sample! It looks great!

In this picture the tinsy bit of red you see in the middle picture is real. On Day 0 Daylon did have some of this form of Laminin. In 30% of JEB kids, their bodies can begin to fix their mutation here and there. For Daylon this didn't help a ton because he has a mutation in a couple places, but it may have helped him to live as long as he did without the transplant. The picture on the right shows an AMAZING amount of correction in his skin's DNA!! Dr. Tolar is really excited about the possible affect of the transplant on JEB kids! I am too! He said that he believes that where there is a little gap in the red (off to the left of the picture) is only there because Caleb's cells haven't had enough time to multiply and fill in the area. With time, that very well may happen!! :)

Isn't this great news!?!
Daylon and I will head over to the hospital around 10am tomorrow for a head CT and then over to pre-op from there. The surgery is scheduled for 1:50pm. Please keep Daylon and the surgeons in your thoughts and prayers. You all are the best!

PS- anyone who's interested, the Press Enterprise Newspaper has done a follow-up story on Daylon and the Children's Cancer Research fund. You can read about it here or by going to http://www.pe.com/ and searching "Daylon Edling".

Minnesota...we're back!

2011-02-10T14:43:00.000-06:00

Well, we're here in Minnesota! Daylon and I flew in on Monday. I really, REALLY don't like flying alone with him (security is a big pain, passengers fear that he's contagious, carrying all his stuff, not to mention the all the fun anyone has when traveling with a one year old), but this trip was too horrible. He actually slept for a third of it too! Yay!
Anyway, he had dialysis on Tues. and they decided not to give or remove fluid. At the end of dialysis he was 11.6kg. Yikes. That was his dry weight at 10 months old. His vomiting has gotten better, but he has very little desire to eat and literally clamps his mouth closed if he sees a spoon come at him. All he'll open for is his squeeze bottle. Not even a syringe of smoothie is tempting anymore. Dr. Tolar and I have been emailing back and forth and I think we're going to plan on added a PICC line when he heads to the OR.
ENT needed a few days to get everything in order for the surgery. It looks like Monday at 1:30pm is the big day. Looks like we're looking at a looooooong weekend ahead of us. It's really okay though, because I'm enjoying the bonding time with Daylon....although I do have to say I miss Brian and the kids like mad! Thank goodness for technology! :)
I want to throw a question out there to all of you:

Are you thinking about having a baby?
You don't have to actually answer that, I just wanted to get your attention! :) A few months back I started emailing a woman named Natasha who has come across a little Russian baby named Anton. Anton's parents hired a surrogate to birth a child for them. She ended up having twins: one healthy baby and one baby with EB, Anton. The parents decided to only take home the healthy baby and left Anton behind at the hospital forever. He's been living in the hospital his whole life. This story broke my heart. I instantly wanted to adopt him, but Brian was level headed and reminded me how much we have on our plate right now. I started telling all of the BMT nurses and doctors about him because I figured they'd be perfect having EB experience and all. We moved back home and I kind of dropped the ball. Anyway, I got an email from Natasha last week that the hospital is moving Anton into an orphanage where there's one adult to every twenty kids. I hate to say it, but it would be really hard for an EB child to survive under those circumstances. They require hours of care and a 1:20 ratio won't allow for the time he needs.
Anton just had his first birthday in January. Psychologists say that he is calm and loving little boy with a surprisingly sweet disposition. Financial help is available.

I've added a link to the sidebar and another at the bottom of the blog about Anton. Please visit his website and pass the word along.
Let's find a home for Anton!!

Day +226 heading out

2011-02-07T02:48:00.002-06:00

Hey Everyone!

A couple things...

One is that I just wanted to let you all know that tomorrow Daylon and I are heading back to Minnesota. We'll be there roughly 2 weeks. He has an appointment scheduled for Tues and with some luck, surgery will be Wed. He will be intubated and hopefully only spend a few days in the PICU. After that, he'll spend the rest of his time over on 5D with all our BMT folk. I'm really excited to see everyone! They're like family to us! :) This is some risk with the surgery and I'm really nervous. Daylon's mouth is one of the most sensitive places on his body and his last oral surgery resulted in the latest oral events. They have said that trauma will more than likely occur with this surgery and the mass could grow back. Anyone who is inclined to pray for Daylon, please pray that the surgery goes well and that no damage is done to his mouth. Please pray that the intubation goes well also. His poor little airway, is an absolute disaster, which I know we need to fix in time, but I don't want that to be now.

Tripp last year at his birthday

I have a favor to ask of all of you. Will you please stop by Tripp's blog and post a note for Tripp and his mommy Courtney. If you don't know Tripp, he will steal your heart, like he's stolen mine. Tripp has the exact same form of EB that Daylon has and he holds a special place in my heart. I've been reading his blog for quite some time now and so much of what Tripp was going through, Daylon was going through. Their lives almost mirrored each other at times. I always really felt like Courtney just spelled out all of the fears and emotions I was having. It's not like I could just go to my local EB mommy support group at the local civic center. EB is such a lonely disease and when you find out that you have less than a year to help your kid (every parent wants to find a cure)...I'm not ashamed to admit I was panic stricken. You know the nightmare where you run and run, but you never get anywhere and no one can and or will help you? That's a lot what raising these babies is like. Anyway, ever since I came across their blog, life has been so much easier for me knowing that there's another family fighting the battle with us, even if the are across the country. Courtney is a wonderful friend and an amazing mommy to Tripp. Sweet little Tripp is such a strong fighter. He was truly blessed to have such a great mommy who has filled his life with love. Tripp is having a really rough time lately and he can use all of our support, love and prayers. Please visit them.

I'll try to write more tomorrow once we're settled. Sweet dreams.

UPDATE

2011-02-02T02:14:00.000-06:00

Daylon and Papa

Hey Everyone!
Just a quick note to let you all know that Daylon is out of the hospital. The bacteria in his PICC line cleared up and we were free to go! Thank goodness that's over with! Round one million in the hospital and Daylon wins again!! Woo-hoo! All seriousness though, the Oncology ICU (aka in MN: BMT unit) staff was wonderful and super considerate of Daylon and all of the difficulties that are presented with tending to a patient you can hardly touch. His right arm pit is the only injury from the hospital stay (one nurse forgot to use aquaphor when taking a temp. and then pulled it out instead of lifting the arm first. She forgot...it happens), but all and all, it went well. :) The sent him home on a strict Vanco lock regimen and IV antibiotics twice a day. Kind of a pain, but hey! It's worth it, if we all get to be at home as a family and Daylon has a healthy PICC line, right?

This is Daylon.

Daylon hates to be bored...apparently...so he thought he would spice things up.

What? Was he not there for the last 18 months?!? They're spicy enough, Little Man.

While I packed our diaper bag for dialysis, Caleb followed me around the house saying, "Mommy, Daylon broke his milk". Yes, I stopped and looked up at him, but everything looked fine, so I kept working...besides! How can he brake his milk? Once he started to raise his voice, I decided to go back.

This is what he meant:

He pulled his entire PICC line out. Stitches and all. Nice.

I got the bleeding to stop and spent the next hour in a frantic, wondering to do with a gaping whole in my son's arm. Good news is: no more TPN!!!
The bad news? Daylon has a high caloric needs for his age courtesy of the BMT and EB, a low mineral requirement (renal failure), however his phosphorus and potassium are dangerously low, low protein requirement (renal failure again), is unable to swallow anything thicker than...well, let me just say he chokes and gags on pudding (mass on the tongue), can't chew (head bleed), and throws up ALL. THE. TIME. Needless to say, this has been a trick. Every morning I blend things like avocados and whipping cream and Suplena (high cal, renal failure milk) and strawberries together. It's been...interesting. Some potions he likes, others have resulted in instant vomiting. Live and learn, right? :)

mac'n'cheese shake (made with whipping cream instead of milk)

There's one other catch in the "weight issue". Since we've been back in CA Daylon weight has slowly and steadily dropped from 14.2 kg (his dry weight) to 12.2kg. That's 4.5 lbs. Come to find out the prescription for his TPN in CA has had 660 cal, which is less than half of the calories he needs. We just found out this week about that, but it's nice to at least know why his weight was dropping. On Monday at dialysis he weight 11.9kg, but they filled him full of fluid and we left with his weight at 12.8kg. We're hanging out right now without the PICC because despite his weight loss, his labs look better than they have since transplant. Woo-hoo!
We went to the ENT doctor today and he said that the growth does not like it's cancerous, but they'll have to wait until the results come in to know for sure. He needs to have the entire growth removed and it will more than likely grow back, but it's growing too fast not to come out. He will need to be intubated and will probably spend a few days in the PICU afterwards. He said that Minnesota might be best for the procedure, but he could do it if we choose to say here. Brian and I are really leaning towards Minnesota, but it will all depend on what Dr. Tolar says. I'll keep you posted.
Now I'm not one to post naked bath baby pictures, but I had to show off his amazing skin!! Oh! Did I mention he actually took a bath with out shedding a single tear? Yep. See, it's moments like that that make this all worthwhile.

One last bit of good news. We were FINALLY able to tapper off Daylon's CSA (it lowers his immune system to decrease likeliness of CSA, but thrashes the kidneys, makes you hairy, nauseated, and your gums swell) on Sunday night!!! We are praying so hard that in a couple of weeks Daylon's kidney function will completely return! We have been so excited for him to be off the drug since July and it's here! After his last dose Brian and I "high-fived" and tossed that bad boy in the trash!

I need to head off to bed. Good night everyone. Thank you for your patience. I'll try to post more frequently. :) We love you!

Keira's first day of Kindergarten in CA (at my old Elementary School!)

On Friday my brother flew down and we got the okay to take Daylon to a non-crowded beach. He can't touch sand or the Ocean, or be in the sun, so needless to say this trip was a quickie at night. Come to find out, the privacy was pretty easy. There aren't a slew of people who go out for a wienie roast in January when it's in the low 50s. Shocking. We sure had fun though! It was Daylon first trip to the beach ever!

note the lighter fluid in Jonathan's hand

fluid in flames

...and this one because it's fun and crazy like Daylon

On Saturday the Corona Fire Fighters invited our family to come down to the station for a tour and visit. Our family just loves the fire fighters in our area. They have been so wonderful and sweet to Daylon and our family this last year. Before we left for MN in May, 30 or firemen came to meet Daylon so that if we ever had to call for emergency help, they would know him and his situation. Pretty nice, huh!

of course the kids always love testing out the fire fighter stuff too!

The only time our girls have ever been twiners

Day +211: Here we sit...

2011-01-21T21:44:00.000-06:00

Well, the title pretty much says it all.
I'm here at CHOC with Daylon, Keira and two different forms of bacteria growing in Daylon's blood. Remember how in my last post I said he might be admitted? Well, turns out he had a staph infection from his Hickman line, but since the fever only last two days Daylon was free to come and go as he pleases and IV antibiotics could just be done from home. I am SO THANKFUL Fairview (the hospital in Minnesota) made us undergo a series of classes so we could take care of things ourselves and spend less time in the hospital! Dr. Buchbinder had Daylon go to outpatient infusion to get IV IG, which is a blood product full of antibodies given over six hours. Daylon is such a trooper! He did cry for about 30 minutes of the six hours, but have you ever know a kid to sit still for 6 hours? He's such a great kid!
Cultures from his PIC line have continued to come back positive for infection and on Thurs it came back positive for two infections. That was the last straw for the docs and they had us come in. If everything goes as planned, we should be discharged late Sunday night which is perfect because Keira starts her new school on Monday and I have to be there for that!

Minesotta called with the first step of his genetic testing results. Basically, they said that it looks to more than likely be genetic (the blister test that Brian and I took, proved that) and he's without a doubt Junctional Herlitz. There's a bunch of other things we learned (which to be honest, I'm not sure I entirely understand), but he's pointless to explain because it doesn't mean a whole lot just yet. Brian and I will be tested next, this June when we return for Daylon's "One Year" check up.
More highlights of the week:
Daylon rolled over on Monday night! He hasn't done that since he was 3 months old, so that's a biggie. Our personal goal for him to have him stand or crawl by Easter. We'll see. Knee skin tearing and hospital stays will definately slow the goal.
Six days ago, as a last attempt to save our son from continuing malnutrition and vomiting, we started giving him 3 ml every 10 minutes all day while he's awake to keep his stomach constantly going a bit. I'm happy to report that it's actually working!! He's up to 10 ml every 5 minutes and vomiting less than 10 times a day!! He even had two days this week where he didn't throw up at all! Amazing!
His skin has also made big stides in improving this week. Almost everything has healed up and he's only been getting a blister, at most, a day! Woo-hoo! We have need to go back to the open cloth diaper over the disposable diaper, like pre-transplant, but that's okay.

Starting next week, dialysis is down to two days a week!!!! Can you believe it!?! His BUN today was 15 (under 19 is good) and his creatinine is 1.34 (under .58 is good). Improvements everywhere!
The lowest point of the week, well, sadly it's not the admission to the hospital. Remember last month when Daylon had oral surgery to remove granulation tissue? Well, during the procedure they used tools to keep his mouth open and remove the tissue that were too rough for his mouth. His mouth developed very unusual blisters, which eventually became infected, then healed up. As they healed, the blister started to clump together into a mass. The mass has grown and grown. It's alarming, actually. The best way I can describe it, is it's like he has a double decker tongue. See for yourself:

Mid-December (the circles are the odd blisters)

This week

I sent the pictures to Dr. Tolar and he is having the ENT doctor from out here take a small biopsy from his tongue to check for cancer. It's just a procaution, but it's growing so quickly that they need to check for the obvious. The thought of Daylon having cancer on top of everything else makes me sick. Brian and I have decided to just put it out of mind the best we can until we get the results. Please pray that his tongue is nothing more than unusual scar tissue.

Other Edling news:

- So excited to speak to Aunt Emily on Skype, Keira ran onto the tile and fell, busting open her chin...AGAIN! Second time in 6 months! I've never, EVER heard of anyone doing that and she's done it twice! Poor kid! I think she must not put her arms out when she falls! :) What a goofball! Six hours in the ER and five stitches later, she was as good as new!

I hope you all are doing well! We're so thankful to have so many wonderful people in our lives! Good night!

The twins are enjoying the Summer like weather in California!

...While, Caleb hasn't adjusted to life without some sort of jacket! :)

Day + 202 We're still here...

2011-01-12T19:21:00.001-06:00

I can't believe how long it's been...everyday around here has been packed full of crazy! Between dialysis and Daylon's doctor appointments all being 20 to 30 miles away (in CA that means up to 90 minutes of travel time one way on a Friday), almost everyday, I'm constantly running late for something. :)

Practicing crawling on New Years Eve!

Starting this week, Daylon is down to three days a week for dialysis. Yay! Monthly dialysis labs were done yesterday and Daylon's Creatinine was 2.4 (less than .58 is good) and his BUN was 54 (less than 19 is good). Obviously, we're still a bit off from being off of dialysis, but these labs were taken after not having dialysis for two days, so really, it's not too bad. Like I said, "Yay!" :) LOL! Keeping his weight under control has NOT been a problem! His dry weight is 14.2 kg and he's keeps weighing in lately at 13kg. His TPN was next to nothing fluid wise, but since he has started peeing, he lost a lot of weight and is constantly dried out. They actually give him fluid during dialysis. That's a switch! Dr. Buchbinder almost doubled his TPN and he's peeing that out too. On Thursday his newest order of TPN will come and that will have even more fluid and they're upping his protein and lipids (fat). Right now his poor little mouth is so cracked and bloody from being dry. I hope this works!

A CT scan of Daylon's head was done and we had an appointment with the Neurosurgeon at CHOC a few days later. He said that it looks like about 70% of the fluid is gone from the newest head bleed. There's a line that goes down the center of your brain and when there's too much fluid in your head, the line is bent. Daylon's line, pre-surgery, was moon shaped. It was awful. There's still a shift to his brain but it is straight in parts, so I guess we'll take it. This Neurosurgeon told me that he felt that Daylon's brain damage was really minimal and that he hardly suffered any brain injury at all. Of course, I was thrilled to hear this but I couldn't understand how his diagnosis could be the complete opposite of 15 or so other doctors that looked at his scans. I left a message for Dr. Tolar and he called me back the next morning. He felt that this doctor probably came to his conclusion after watching a healthy Daylon clap and play on his examining table. It would be hard to say that he should be severely handicapped when the only version of him that you've seen is one where he's acting like a normal toddler. He also said that he thinks the others were more dismal for the same reason. They saw him in a coma in the PICU. Life for anyone can easily look grim at that point, I guess. So plan is, he gets another CT scan in a month and if the fluid isn't gone then he gets another Burr hole surgery if we and Dr. Tolar agree it's necessary. Daylon and I would return to Minnesota at that point. As much as I love Minnesota and the wonderful people there, I was kind of hoping to stay in CA until June. Plus, more than any of that, I REALLY want this kid to get a break. Anyone who knows his story the whole way through, knows that he has been through more in his 18 months of life that most adults have. I know he's been through 10 times as much as Brian and I combined.

There was a confusion on the level to transfuse Daylon last week. CHOC dialysis transfuse at a Hemoglobin of 6, CHOC BMT 7 and Minnesota transfuses at 8. 10 days ago they found out the Daylon's hemoglobin was 7. something and he would need to be transfused. The dialysis people said that it would be too hard to get the blood on the weekend, then on Tues they forgot to order it before we got there and they said they would have to work after closing to transfuse him, so they wanted to do it Thurs. By Thurs when he was finally transfused he was on the edge of a 5. It made him so sick. He was fussy and vomiting pretty violently. They're not used to having a parent involved like I want to be involved and I think it annoys the dialysis folks. I kept asking for the transfusion and they would say he was "fine". Once Dr. Tolar got involved, the job got done. It's kind of frustrating that when I ask, what's his blood pressure at the say "it's OK" and I have to repeat myself until I get the numbers. Same thing with labs. I get "they're fine" instead of the numbers. Needless to say, I've learn to ask for a print out. :)

Skin wise, Daylon's not having the best time. He has started blistering again. On the days he gets blisters, he tends to have 5 or so, which is still an improvement from where he once was. His back is a COMPLETE disaster. There are only trace parts of his skin that are still intact. His left knee and now his leg have broken down and we had to wrap it up again. His left leg upper thigh, groin and penis area are also raw and inflamed. We switched from the disposable diaper, to Fuzzibunz (a popular cloth diaper among EB babies) for the first time. In the past, I didn't think Daylon's skin could handle the Fuzzibunz, but I thought he might now. Anyway, turns out, he still can't he ended up getting pea size holes in his back's skin, where the diaper's elastic (wrapped in fleece) touches the back. Oh, well. Back to our old technique. We're back to our 1/2 jar a day habit of Aquaphor and wrapping Daylon in fluffy blankets and sheep skin to protect him from life and his self too. I have to admit that this time, watching his skin break down has been tough on me as well. It's easier to deal with kidney and brain issues when he's able to enjoy his skin. Not to mention, I have my parting conversation with Dr. Tolar floating in my head. One of the last things I asked? "So, be honest with me. After all of this...is Daylon still dying?" I could tell by his face that he wasn't expecting that question. He told me that no matter what he did, Daylon would always have Junctional Herlitz EB. He could never have non-Herlitz EB because those kids have a mutation that is entirely different than Daylon's. They're missing Collagen 13 and although his level is low, he has collagen 13. He is missing all three Lamin genes and while the transplant is helping to produce the lamin genes, he will more than likely never have as much as your average person. With 30% of the needed lamin though, he could live a "normal" life. He said that as of right now, he didn't think Daylon was near his demise, however, he said that may change in a year from now or 5 years from now or 10. It's all a wait and see thing. Watching Daylon's skin fall apart this last week, I couldn't help but wonder how much longer we had with Daylon here on Earth. I pray this transplant bought us more than a couple of months with him.

Taking a couple of minutes to realistically think about this, I believe in my son and he's a fighter. Skin break down is the normal part of post transplant life. I am sleep deprived, sick and nervous being 1600 miles away from the hospital and team that knows Daylon and knows the transplant. The race between the benefits of transplant and the prognosis of death in infancy that he was given at 3 weeks old have been a constant fear for the last year since we found out about the BMT program. Having self mastery over my thoughts is obviously not a strong point of mine right now. :) I'm sure this is just a bump in the road.

I'm looking forward to celebrating Daylon's second birthday this July :)

Everyone around here is doing pretty good. Brian caught a cold and it has made it's way through everyone except Sadie. Daylon ran a fever and should have been hospitalized, but the dialysis nurses didn't pass on the info to the BMT doctor, so they didn't know about it until he was better. Thankfully, (and I don't know how) but it didn't have the lingering effect on him that it has had on everyone else.
At this moment it's noon and Daylon is still asleep. He's been flirting with a fever and vomiting all night. We may be heading to the hospital later for admission. Just a heads up.
Thank you for all of your love and support. Happy New Year!

Dr. Daylon

Day + 185 MERRY CHRISTMAS!

2010-12-31T00:03:00.002-06:00

I hope everyone has had a Merry Christmas and is enjoying this holiday season. Life for us has been crazier than we can keep up with. First off,

WE'RE BACK IN CALIFORNIA!!

California Christmas! Palm trees get in the Christmas spirit too!

Dr. Tolar, Dr. Stephanski and Teresa worked their butt off to make sure that we were home in time for Christmas and that is something that I think I will always be grateful for. I told Brian and the our families that Daylon and I would be in on the 23rd, but Teresa had worked out our appointments at CHOC to be that day so we flew in on the night of the 22nd. I found a $15 rental car (thank you Priceline.com) and Daylon and I drove home from LAX to surprise everyone! It was so great! We flew in at 11:05pm, so by the time we did the whole baggage claim and shuttle to the rental car place and then drive home, it was 2 am. I know. LONG day. Anyway, everyone was sleeping and we just stood in the hall calling out until people woke up! So fun! You should have seen their faces! Brian actually ran across the bed! Ha! Kodak moment and me with no camera! Figures!
The transition from Minnesota to CHOC was completely taken care of the staff up at the U of M which was nice. We knew when our appointments were and where to go. Since we've been here, it's been a hard adjustment but I think that has a lot to do with my lack of ability to handle change. We just left the top hospital in the US for bone marrow transplant and the doctors here is very open about how things are going to be different. Daylon's newest doctor to the team is Dr. Buckbinder. He's a very friendly man and seems to take a great interest in Daylon which I appreciate. Dr. Vega is the Nephrologist here in CA and will be taking care of Daylon's kidneys. She seems pretty nice but not as interested as I had hoped in talking with the docs from MN about Daylon's past. In MN, Daylon was listed as an Acute Renal Failure patient (meaning that his kidneys are temporarily failing) and a full lab panel done with each dialysis. We always knew everything from his BUN to hemoglobin. The doctors saw the patients several times during a run and were the ones to make the call on how much weight to take off and how long to do it. Here they don't have acute patients in clinic, so Daylon is listed as a "Chronic" patient. They do ten consecutive potassium checks and the the potassium will join all other labs and be done once monthly. So, ya ready for some good news that makes this once a month bit rough to hear? Daylon's kidneys have opened up! He's now peeing like a normal little boy and we need those labs to understand when the pee has become "good pee" and is excreting the toxins in his body. Dr. Kaston (the Nephrologist in MN) said he would be lowering Daylon's dialysis visits to three times a week if he were staying and that it may be just a few more weeks until he could be off! YAY! Woo-hoo!! Daylon is peeing enough to come in to every appointment lower than when he left, so I think things are moving along, but I don't know for sure. It's hard too because the Nephrologist only comes into clinic on Thursdays so there's not much time to talk about things. Last week he went to dialysis everyday and this week it's been almost as much. Ugh. So frustrating.
I do have more good news...Daylon is no longer vomiting and is slowly working his way up to his caloric goal. He's able to take about 3 ounces by mouth now (through syringe or top cut nipple) and eats anywhere from one to four baby food servings a day! I can't even believe the change! He's still on TPN for 12 hours a day and we are meeting with his GI doctor regularly now to see if he can tolerate a slow wean of the TPN. Daylon also has a head CT scheduled for Monday. Dr. Haines (MN neurosurgeon) wanted the CT done to check on the fluid and membrane of dried blood. The goal is to have it absorb and the sooner the better. The stitches on the three Burr holes are also supposed to be removed today and I'm praying that his skin and hold up for the process.
We are SO THANKFUL! that Daylon has stayed healthy through all the traveling and bad weather! :)
Just as a little heads up, Daylon is still very fragile and the slightest illness, like a cold can be fatal for him. He still has to use his mask and stroller covers whenever he's around people outside our family. The doctor has us slowly reintroducing outside germs to his body again (IE: 15 min max in Target mid-morning when costumers are few or a walk outside when there's no wind to blow plant spores) but we won't be bringing Daylon around to any large group gatherings (IE: parties, school, church, movies, etc) until his one year mark in late June...assuming Dr. Tolar gives us the okay. It's really important that any close friends and family that do visit with Daylon have not been sick in the last week or be living with someone who has been sick. I can't even begin to explain how uncomfortable writing this paragraph makes me, but Daylon has come so far and been through so much that we just can't be careless now. I'm sorry to be the barer of bad news, but thank you for understanding. :) You all are great!
This Christmas was especially special for us because not only was Brian's entire family together for the holidays (he's the fourth of six children) but so was mine (I'm the second of five and the only one who lives in CA still)! My family hasn't been together for Christmas since 2003, and back then, Brian was the only addition to our original family. Daylon has never met my youngest brother, Jonathan who came home from his two year mission in Argentina back in July while we were in MN. I loved introducing them to each other. :) Our niece (my sister's) and our nephew (Brian's sister's) were also born since we've been gone. It was so fun to meet these little cuties! Tell me they're not a couple of dolls!

Elizabeth!

Landon! (and Uncle Gene)

We didn't do any sort of party or real celebration for the twins (Daylon was sick) when they had their third birthday on the third of the month and since we had to skip out on their second birthday party as well (we typically celebrate their half birthdays since they were born so close to Christmas and this June we were in Minnesota getting ready for the transplant) we just decided to celebrate once we got home. It was just immediate family since Daylon can't be around any kids who aren't his siblings or cousins. Anyway, their party was on the 23rd and was such a great time. I felt guilty for how low key it all was, but the girls really had a good time and that's what counts. The party was at Pump it Up and because it was Christmas week, they offered a HUGE discount! I love a great deal (like half of what we normally spend on their parties)! We had the whole place to ourselves! This is definitely a family place worth checking out!

The girls and Uncle Jonathan

Aunt Lindsay

Uncle Joseph

Cousin Ashton

CousinAleyna

Cousin Gavin and Aleyna with Keira

Aunt Jess

Baby Zeke (cousin) living on the edge

Aunt Michelle, Uncle Deven and Elizabeth

Sadie and Violet ssssssliiiiidddddiiinnnggg down!

Boo-boos happened...oddly enough, only among the grown-ups! LOL!

Aunt Emily

my side and his (minus the Jacobson's and the Talbots)

my four siblings and I

On Christmas Eve...

SANTA CAME!

While all eyes were on Santa walking in the door, my eyes (aka camera) was on my biggest Santa fan! If you couldn't tell, Caleb was THRILLED to see Santa!

Christmas was great and the kids have more than enough toys to last them their whole lives! Having all those aunts and uncles comes in handy! :)

On the 27th, Brian and I celebrated our seven year wedding anniversary. I can't believe it's been seven years. Brian and I have seen each other through so much in such a short time. The first six years were filled with what felt like 10 years worth of life experiences, but I know that we were just being prepped for this last year. I can't imagine going through all this with anyone but Brian. We're a team, all the way. Daylon's nurse (and friend of ours) commented that we talk about everything and it made her laugh to hear us cracking each other up. Brian is my best friend and my favorite person to spend time with in the world. Where ever I'm at, if he's with me, I'm home. I just want to publicly thank my Heavenly Father for such a wonderful man in my life and tell my hubby, " Happy Anniversary! I'm so glad we have eternity together!"

Well, enough of the mushy stuff. :) Thank you all for your concern, prayers and love! You guys are amazing. Happy New Year!

Violet built the Ronald McDonald House

Quick update

2010-12-19T10:22:00.000-06:00

I traded out with Brian on Friday night and got back Saturday, so I wasn't able to post (laptop is at the hospital). Just a quick note to catch you all up...
Dr. Tolar and Dr. Stephanski (the attending on at the hospital right now) both thought that Monday is too soon for Daylon to go home. Brian and the kids are heading home as scheduled on the 20th, with the hopes that Daylon and I will be shortly behind them on the 23rd.
Daylon is off all of his drips but the blood pressure med. He had a sudden jump in vomiting again and blood pressure issues Friday night and Saturday day. He has to also be 48 hours without a fever and right now, he's almost at 24 hours. He's still vomiting old blood, but they feel it's appropriate given the JEB and intubation 6 days ago. Since his hemoglobin is stable (meaning there probably isn't internal bleeding), I'm not worrying too much.
I really want Daylon to be healthy for Christmas, but there's no rushing this sort of thing. The most important thing is that he gets better. The thought of not being with my other kids on Christmas is heart wrenching, especially because I've had to bail on them so many times the last 17 months, but hopefully I can make it up to them once we get back to CA. The best part is that we have another year with Daylon. This time last year I was praying he would last until Christmas so we could have at least one Christmas as a complete family here on Earth and look! we're getting a chance to have two! We've been so blessed.
I'll post more later (with pictures) either today or tomorrow, once things calm down. I hope you all are enjoying this Christmas season!

Day +178 - update from the PICU

2010-12-17T00:07:00.000-06:00

Good Evening All,
It's night four on the PICU (this time) and it looks to be our last night here! Let me explain the my spunky son's last 36 hours to you.

Okay, so yesterday morning was my last post. Life was dramatic and crazy and then at 1:30pm Daylon threw up older blood tinged with fresh blood (gross, I know. Sorry). That was quite the hefty vomit, but something pretty great happened. He stopped throwing up! His blood pressure still soared through the roof and since he wasn't getting sick, they started Daylon on a really hardy dose of Amlodipine (the blood pressure med that he was on at home which is stronger than the IV meds) . Towards the end of dialysis Daylon became a wild man. He was thrashing, jerking, rubbing, moaning, and basically beating himself to shreds. This continued ALL NIGHT LONG. He seriously did not sleep. He would rub and writhe and then start to look like he calming down to go to sleep when, presto! he's awake and jerking spastically (is that a word?) all over again. The PICU doctors were in and out all night. At around 1 am his oxygen saturation was at 80% so he started up on a blow-by of oxygen to keep his numbers happy. At 2am? Fever of 102.8F. By 7am he had had a chest x-ray, the neurosurgeons visited and a request for a neurology consult had been made, oh, and one other thing...his blood pressure was normal! He was still maxed out on his pressure meds, but hey! it's being controlled! The PICU docs were afraid that all of the crazy movement was seizure related. I wasn't convinced. I just didn't have that feeling in my gut that we were moving in the right direction. He was uncomfortable (miserable may be a better word), but he looked more itchy than seizing to me. Sometimes I get the feeling that part of his problems are medicine related. It's hard to keep track of all of their side effects. He goes on a med to fix one problem and it creates another. Am I making sense? Anyway, I asked the BMT doctors to take him off the dilaudid drip and put him on another pain med. It didn't make any sense why that should be a problem because he was on it for 4 months early after transplant, but I just had a gnawing feeling that it needed to go. Well, they switched it and his itching went away! Come to find out that although Dilaudid is the med they give you when Morphine makes you itch, they're from the same family of drugs. Very few people feel the itchy side effect, but apparently Daylon is one of them! I assume that we didn't notice in the past since he was intubated initially, and then so weak from being intubated that he couldn't scratch! This experience was such a testimony to me that our prayers are heard and answered. Daylon is definitely being looked out for from above.
He has continued to calm down throughout the day which has helped his blood pressure numbers. He is currently being weaned down on the drip (from a 7 to 3.5) and is at 105/65 (goal is under 110). He has thrown up twice this evening at the end of a coughing fit. Soooo much better than the 48 times recorded two days ago!
At 5:20 the BMT doctors came in again to check on Daylon and they were SHOCKED by his improvement! We chatted for a while and then came the news.
Dr. Stephanski (looking at the clock)- "Daylon has 24 hours to turn this all completely around or else you two can not fly home on Monday with your family. We'll be back tomorrow at 5:30pm"
I'm not stupid. I knew this was coming. My first and most important desire is to have Daylon be healthy. The second, is to go home.
I really want to be on that plane.
Alright. So, here are the things he needs to accomplish:
-be off oxygen
-have drain removed
-be off nausea drip
-be off pain killer drip
-be off blood pressure drip
-no fever
-all meds switched from IV over to oral (would like to see)
-acting "normal" (neurological function returned)
-no positive cultures

If I know one thing about my son, it's that he never gives up. He's the type of person that if you tell him he can't, he'll tell you, "watch me". I'm sure I'll be irked by this attribute 13 years from now, but right now, I love it...and I'm countin' on it!
Since 5:30 tonight, so much has happened! About five minutes after they left, his oxygen saturation went to 100% and so he was lowered from the oxygen every so while or so until he was off it!

He has also proven to be well enough to have his drain pulled and the hole stitched up. They said that it would be painful but not so painful that they have to take him down to the OR. Guess what? Daylon didn't make a peep. The most he did was scrunch up his eyes. Such a toughie. I know I'm bragging, but come on...I'm a mom. We're supposed to do that, right?! :)

I'm so, so, so thankful his fever is gone and nothing has come back positive for infection or bacteria. Three of his meds have been switched to oral form and he hasn't thrown up! Woo-hoo! Like I said, he's down on his blood pressure med and will hopefully be off by morning.

Neurologically speaking, he's completely back to "normal" (I kinda hate that word). He sat in bed for about 30 minutes playing, he's been rolling all around his crib and talking away to anyone who would listen. I actually don't remember him babbling post transplant . Don't get me wrong, he's plenty noisy, but it's mostly just yelling. He was actually trying to copy the nurse and I tonight. I have to admit, it's a pretty great feeling! The nurse said once tonight, "Yeah, yeah, yeah" and Daylon repeated the whole thing back! We just stood there with our mouths open and a "Did you hear that!?" look on our faces. I hope that tomorrow morning we can start going down on the pain med, and then the nausea. It's all up to how he feels though, so we'll see. I know there's only a slight chance that Daylon and I will make it home as scheduled, but it's great to see him try. I haven't given up on him yet, so now won't be any different.

I believe in Christmas miracles.

Do you?

All that rubbing and scratching left with two corneal abrasions...again

Day +175- 36 hours after

2010-12-15T14:13:00.000-06:00

Daylon and one of his favorite nurses, Ben

To say the last 36 hours have been stressful would be an understatement. About 20 minutes after I last posted, Daylon threw up for the first of many, many times. By midnight, the night of his surgery he was inconsolable and crying in pain, itchy like I haven't seen him in months (EB is not only a painful disease, but a VERY itchy one), with blood pressure the highest I've seen it. He cried all night long. Pain meds didn't touch him, anti nausea meds didn't touch him, his high blood pressure meds didn't touch him. This continued all yesterday as well. Yesterday morning he started running a temp of 101.8F that Tylenol couldn't fix. The doctors changed out his high blood pressure medicine drip with a stronger med and are titrating it. He maxed out the highest dose on the titrate, so they upped that as well. High blood pressure could be caused by a number of different things, but when it's this high (and with his medical history) he is at a risk of a stroke. His latest blood pressure? 170/100. The fever is obviously the sign of an infection somewhere, but where? They've tested and cultured everything they can think of and the results are all the same...negative. His pain tolerance is one of the highest I've seen and he is showing signs of being in A LOT of pain. Why is that? The doctors said the pain should only be moderate.
When he's not crying, he's moaning and flailing about. The PICU nurse and I took turns standing at his bedside during dialysis to hold him down and prevent him from loosing his run (and all the blood that was in the machine at the moment). It was a five hour run that lasted 7, but in the end they took off one whole kg. so that's good.
He's breathing has become very rapid (like 60-80 breaths a minute). His nostrils are flaring and he's needing to breath using his belly instead of his chest.

If you add this pot of mess together what does it equal? One sick kid and a heard of stumped medical personnel.

They switched his meds all around every which way and he's currently on a drip of pain meds and a drip of nausea meds with bolus of medicine for his break through symptoms. Besides a slew of blood work, he's had a chest x-ray which came back crystal clear, a head CT which showed that there are no new hematomas, but there is still a bit of blood left in his head and a pocket of air has found its way inside his skull. That can contribute to some of the extra pain at least. Unfortunately, the CT came with a price. The foam pads they put in to keep your head in place hit the Burr holes and he's started to ooze and bleed from the site. :(

This morning he had an ultrasound of his kidneys preformed to see if the vessels in his kidneys are narrowing or something. I was told by the technician that things looked okay from what she could make out, but that the radiologist can see more. We're waiting on those results.
It was decided also to dialyze Daylon today to see if vomiting for weeks has lowered his dry weight. If his dry weight (the weight he should be) has been lowered, then they aren't pulling enough fluid off of him which can cause high blood pressure. To everyone's surprise, when Daylon was weighed a bit ago, he is up a full kg. in 15 hours. It's surprising because he didn't take in a kg of fluid.
We're grasping at straws, but at least there are still straws to grasp at. :)

Well, that's the update in a nutshell. I need to get back to Daylon. He's starting to wake up. Please keep the prayers coming!

Day +173- Part two

2010-12-13T23:07:00.002-06:00

Several of you commented that Daylon looked like Clark Kent with his new glasses. Well, it's time you knew...

He's SUPERMAN!

Hello Everyone!
Thank you all for your prayers, kind thoughts and comments. They've really helped Brian and I through today. Daylon has been in his room for only 20 minutes or so. I'm thrilled to report that the surgery went well. It was a long day and nothing happened on time or as quickly as I hoped but it's done!

not feeling too hot before surgery...but still willing to crack a smile!

All three EB trained Anesthesiologist showed up for surgery and worked together to intubate Daylon. Literally. It was a sight to see. All three doctors crowded tightly around Daylon's head, glued to the camera. One had her hand on his throat to feel it go in, while the other two worked the camera. They put up no front and made it clear that they were nervous about the procedure. It's an unpleasant thing to watch your baby be intubated (especially with the gun camera in his mouth), but I can't even say how appreciative I was to watch these professionals provide the best possible care for Daylon by working together. Once he was all set up and the drill was out and ready to go, I headed for the door. An hour and a half later they called me back into the OR to help bandage the incisions. They drilled 3 nickle size holes in his head. Dr. Tolar said that has soon as the first hole was in and the drill removed, a gush of fluid came out. I'm glad I was in the lobby for that. I checked out the wound and got the low down of what happened during surgery and then Dr. Tolar took the reins. He set up biopsies and photography to take place while he was still unconscious. He told me that Daylon's skin is performing above average at this point post transplant. That was nice to hear. I needed to hear something good. Extubation went well, but the whole process left Daylon really hoarse. He's gotta a husky voice to begin with, so this wasn't a shocker for me. Dr. Tolar said that the mystery sores in his mouth are not EB related. He's going to have them cultured because he believes they're the product of some sort of infection. One more thing to add to the pot. :) Until the drain comes out he can't be up higher than 3o degrees or be held. That will be a toughie for him. He LOVES to be held lately. As of right now, he's in a lot of pain obviously (three holes in the head and eight in the thigh might cause a bit of pain! :) ), but as always, he's a champ. He's the toughest little guy I know. I'm so grateful he's okay.

Daylon is in the PICU for now and will stay here for 3 days or so (fingers crossed) and then he'll be moved back to 5D. All the doctors have said that things have gone so well today that we are still on tract for going back to CA on December 20th! I'm so excited. I PRAY that it all works out!! BMT is an emotional roller coaster like I've never been on before. When we got to Minnesota, my naive little mind thought that transplant would be really rough the first month, tough the first 100 days and challenging up to the first year. HA! :) While he was in 5C last time, I just kept thinking, "It's one hundred days. We can make that". After that Day +100, everyday has been a little bit of a drain. I know I shouldn't have, but I've put all my eggs in the 'going home for Christmas' basket. I'm emotionally tapped out. I have no clue how the BMT families from the past have done this. Living the BMT life for years? Wow. I have so much respect for them. I'm hoping that living life in the BMT fast lane (or slow lane, depending how you look at it) will get easier once we're back in Southern California with our extended family and the life we're used to. I'm so looking forward for the disaster of the day to be Keira's teacher calling at 10 am to ask me to bring 4 dozen cupcakes up to the school by noon. I used to hate those kind of days and now I love 'em. Go figure.
Enough rambling about me. We have one last bit of news to share....

This weekend Minnesota received the 5th largest blizzard in the state's history. Our city had a "Snow Emergency". Everything from restaurants, to stores to snow plows were out of commission. Currently, 2/3 of Minnesota's average seasonal snowfall has been met. We had a negative 15 day on Sunday to boot. From what we've been told, this kind of cold is typically of late January-early February. Lucky us.

Our living room window...on the SECOND FLOOR!

Seriously though, this was a really amazing storm. I hate driving in the snow to the point that I think my driving days here are over, but it was so crazy to see the snow fall sideways! I walked home from the hospital in it and it occurred to me for about the, uh, I dunno, fiftieth time that I could have never been a pioneer. My skin burned like it was on fire and I couldn't even see where I was or where I was going. R-I-D-I-C-U-L-O-U-S.
Warning: these pictures are really blurry and well, not the best. I hate the flash and it was freeeeeeeezing!

Outside the parking lot doors

There are the cars in the parking lot. Kind of. :)

It was fun to walk under this. I wasn't scared a bit. :p

Our landlord needs a place to stay apparently

RMH

The park across the street

This would be Keira, hip deep in snow

blizzard ends and it's time to trade off at the hospital.

The kids thought the snow was great until they, one-by-one got stuck in the mounds of snow as big as they are. It's the kind of memories they won't soon forget. I love making memory wrinkles in their brains!
Well, I'm ending here. I wanna post this before it gets any later. Thank you all again. You're amazing. We love you!

Sweet dreams.

Day +173 - PLEASE PRAY

2010-12-13T01:55:00.000-06:00

Hey all,
I'm sorry for my absence in blogging this week. Daylon is still in the hospital. He is still vomiting (although today there was marked improvement) and this week they discovered a staph infection in his blood through one of the PIC line ports. He had a head CT that revealed a significant increase in fluid in and around his brain. His most recent hematoma is apparently reeking havoc. He is scheduled to have brain surgery tomorrow morning sometime. They've been working on making sure everyone involved has learned about EB. Dr. Tolar will do his 6 month biopsies following the surgery and also get a biopsy of his tongue (some new questionable sores have popped up and no one knows what they are). To be completely honest, I'm a nervous wreck about the whole thing. They will be drilling a nickel size whole into his skull and have to cut into the vessels that broke and caused the brain bleeds. The amount of pressure (from the fluid) he has may be the source to his vomiting and high blood pressure (he's on 2 meds and one's a drip. They've been 140-160 over 80-100 with the meds. They've upped their game again tonight and it's helping). It's late and I'm rambling, but I just wanted to ask you all ( beg you all really), to pray for Daylon and the surgeons. This surgery also comes with the risk of infection and brain infection is not something you want to mess with. There are so many aspects to think of: the surgeons missing and hitting his brain, his skin not cooperating, infection, Daylon pulling the hose they are going to attach, re-damaging the brain, etc.
We're so very thankful for all of your love and support. I PROMISE I will post something at some point tomorrow. We love you!
Love,
Jenn

Day + 163 - Daylon update

2010-12-05T00:21:00.000-06:00

Yesterday was Sadie's and Violet's 3rd Birthday and Daylon was sicker than a dog. He was vomiting ALL. DAY. LONG. Let's just say that the good hours of the day he puked 4 or 5 times. We did our family tradition breakfast of the candle in the donut and then got the kids ready for preschool. While Brian was gone walking the kids down to school, Daylon threw up (somehow) in his hair, so I decided to give him his first real bath since May...with the hope that it would be the first bath ever that he enjoyed.

I don't know what I was thinking. Big mistake. He was fussy all morning and he was fussy in the bath. Not to mention, that once I got him in the tub I realized that it was impossible to wash his hair without getting his Hickman wet. I knew there was a reason he hadn't been in the tub. :) I held him while Brian washed his hair over the tub, then we did a dressing change, two line changes and dressed him all with intermittent vomiting. Total time? One hour! Not bad, if I do say so myself! :) We cuddled for about a half hour and he calmed down. I'll save you from the day blow-by-blow and just say that the entire day was changing him and trying to cuddle and soothe one very fussy boy... over and over again. Brian took the older four to go see Disney's "Tangled" for the girl's b-day and they had a blast, so the twins did enjoy their birthday.

Daylon showing off his first haircut (not counting the one chemo gave him)

Today Brian took Daylon to dialysis, while the kids (ha!) and I packed. Holy smokes. It's amazing how much JUNK you can accumulate in 7 months! It took me the WHOLE DAY to pack up only about a quarter of our what? 400 or 500 sq feet?!

Grandma, Papa and Grandma M&M singing "Happy Birthday" over the phone (Violet was sung to first and I didn't think to get the camera out. :( )

Whole lot a junk and four little helpers who were suddenly very interested with whatever I put in the boxes. :) Brian called me at 2 this afternoon and said that Daylon was running a 101F temp, so he was admitted to the hospital following dialysis. He'll be in the hospital for a minimum of three days (that's the rule for a fever) and on Vanco (IV antibiotics). They sent his blood to be checked for infection, so we should hear back in the morning. There doesn't look to be an infection on his skin anywhere, so I don't think it's wound related. What ever this is, bug or infection, I pray it will end soon. Please continue to keep our little man in your prayers. Thanks for all your support!
Sweet dreams.

Someone randomly dropped off a b-day cake at the RMH and the office gave it us!

PS- The weather here is so crazy! The weatherman says it was the coldest day today since Feb. 1st. Minnesota received 6-13 inches of snow (depends where you are... Minneapolis was 7.2 inches) last night.

Day + 162...I think

2010-12-03T03:00:00.000-06:00

Hey Everyone!
It's late and my eyelids are h-e-a-v-y, so I'll make this one short.
Daylon is doing pretty well. Remember how I said that Caleb was sick with the flu bug in the last post? Well, Daylon got it...we think. He's been so pukey the last two days. This poor kid can't keep even his medicine down, more or less fluid. He's also caught a cough, so not good. BMT isn't too worried about the vomiting (they were called directly to dialysis today when Daylon wouldn't stop vomiting and the Neuphrologist got concerned) because a bug's been going around the RMH house the last month (so we're told) and it's beating on the post BMT kids. I guess he'll be on TPN for a bit longer. His malnutrition is working in his favor right now! I don't know what we'd do if he wasn't on TPN already! :)

Sorry they're blurry. He's a wiggle worm and I'm not a fan of the "flash"

I know he's my kid, but I have to say it...Daylon amazes me. He will be so, so sick (the term "violently ill" comes to mind) and then the nausea calms down for a couple minutes and he's smiling and pointing and wanting to be cuddled. He's really teaching me so much. I always felt like I was someone who "loved life", but Daylon knows the true meaning of the phrase. I'm so blessed to be his mommy. I have five wonderful kids who inspire me to be a better person. How lucky am I? Well, not lucky I guess, but blessed. The twins turn three tomorrow and I've been doing a lot of contemplating today. Three years ago from right now, I was in labor 6 weeks prematurely and worried about what that might mean for the girls. Come to find out, being born at 34 weeks for twins is fairly common since the average uterus can only hold 11 lbs (see what you learn when you need to? LOL), but I was scared out of my mind. They had a rough first few days, but made progress each day and were out in about 3 weeks. It was an the type of experience that changes you, you know? It got me thinking about how merciful Heavenly Father is, and how if I had not experienced those three weeks beside Violet and Sadie, I don't know how I would have handled this BMT process...goodness!... even life raising Daylon! Isn't great that our darkest days and bring us light later in life! :)

Thank you for all your prayers! Let's pray this flu ends soon and he avoids another trip to the hospital.
Happy Friday (officially)! Sweet dreams.

Keira's class made her a 'Build-A-Bear' puppy while she was out sick on a field trip. Sooo sweet, huh?

Day +158- Hello out there!

2010-11-29T11:34:00.000-06:00

Oh my goodness! It's been a while now and things have been crazy! We just got our computer back! It's been over a month since we've had a working computer...Toshiba took their sweet time, huh? I hope I didn't worry anyone too much. My phone has decided not to let me on the Internet either, so I've been out of touch with reality. Let's bring you all up to speed....

Caleb loves Aaron and Jackie!

I wasn't able to write much in the last entry because my phone was acting up and I could only write in the "Title" line. Daylon had surgery on his belly and had a PIC line placed in his right arm. He only lost about 30ml of blood, which is a first and a huge plus. :) They kind of did a tummy tuck technique on his belly: They cut out the really bad area of skin and widened the opening, sewed each layer (IE: stomach, muscle, fat) and then pulled the two ends together and sewed the skin closed. We are SO, SO, SO thankful that the stitches have stayed in! The incision is only two inches or so, but it's a good portion of his belly. Typically, the surgeons are pulling the stitches out as they put them in. It's taken a few procedures, but they're getting down a new way to keep them in....not to mention, the transplant is working. A CT scan of his brain was done on Wednesday which showed two things:

The fluid on the left side of his brain has decreased significantly...more than anyone would have thought, actually! Yay! The hemorrhage on the left was down graded from quote, "as big as you can get" to medium or mild! :)
The right side of his brain has a new hemorrhage with fresh blood. :( Who even knows how it happened. They said that Daylon could have thrashed his head, moved too quickly, anything. We have to continue to be diligent in making sure he doesn't move his head to quickly or heaven forbid, fall.

So, what does this mean? Well, for now, surgery has been put off. He isn't a candidate for a shunt anymore because the fluid isn't re-accumulating. Next week he'll have another head CT to see if there's less fluid on the left and how much fluid has been created from the new head bleed on the right. If there's no improvement or if there's more fluid, then they'll drill into his skull to release the fluid. As soon as the fluid is absorbed or is released, then his head should quit growing and begin to fit is brain again, reducing the chance of head bleeds, stroke and or brain damage.
From all of the open skin, he developed a staph infection that covered his abdomen. Between that and needing to wait to have all of his meds transferred from IV to oral, he was in the hospital until Saturday night. Back at home, trouble was brewing at the same time. Keira's croup started acting up the day Daylon was admitted. Sadie started having Croup issues, a few days later. Apparently, Croup is highly contagious and can be devastating to immune suppressed kids, so the doctor had Brian and the kids stay locked up in our room and Daylon and I were sent to a hotel.

he's in there somewhere!

We got to the hotel on Saturday night and Daylon and I hung out and played and were bored together. The TV had every news channel you could want (or not want in my case) and local channels. Slim pickins. It was nice to bond with Daylon, just the two of us, in a comfy setting. He smiled a lot and we did a lot of physical therapy and practiced drinking from a bottle. By Monday he was up to three whole ounces!! Pretty impressive!
During Saturday's dialysis the nurse held down his hand to keep the pulse oximeter on and it blistered up his hand. I was so upset! I lanced almost 10 blisters on his hand and wrist and it left his whole hand open. On Monday at dialysis, his finger had blisters all over them. Life with EB for Daylon means that once an area gets a blister, the surrounding area breaks down over the next several days. I feel like it's a race between EB and I over the condition of Daylon's skin. Anyway, I didn't think much of it until he had both hands side by side. His right hand was red and his fingers were almost double the size of his left. After dialysis, he had an ultrasound of his arm where they found a blood clot from a location that the doctor attempted to put the PIC line in at and his Hickman line and PIC line were sharing a vein and blocked blood flow where they met up. Soooooo, back in the hospital we go. PIC line was pulled Monday night, new line put in Tuesday afternoon and we decided to throw in a tongue surgery too. For those of you who have followed the blog since July, this will be a repeat for you, sorry. On the forth of July, while Daylon was intubated, the respiratory therapist suctioned Daylon's mouth with a neosucker and pulled a several layers of skin off his tongue when it made contact. I will never forget watching his heart rate soar and tears stream from his sleeping eyes as he lay there paralyzed from meds and trapped in his body. From that incident, a large growth of scar tissue formed on the side of his tongue, which peaks out from his closed mouth. Now that his one year molars have broken in, he's biting on it and the area keeps bleeding. Anyway, we had the ENT come in and remove it while he was under. He received several new blood blisters in his mouth from the tool used to keep his mouth open, but the growth is gone! Woo-hoo! With any luck, this will help him to want to eat.

Viking players came for a visit!

On the home front, Brian took the girls to the doctor's on Wednesday (typically with Croup, it last a couple nights and goes away, so we don't take them unless it's bad to get steroids) and Keira was diagnosed with Asthma...although, I'm not sure I'm convinced. I think Violet is catching her "Asthma". :)
Daylon was released from the hospital Thanksgiving day, which was one of the things we are thankful for. We were able to be together as a family for the first time in two weeks!! It felt like an eternity! It was so hard not to see my hubby and kiddos for so long. They were really sweet and snuck into our hotel room on Monday and put up a homemade "We miss you" sign and pictures the kids drew for Daylon and I.

Unfortunately, a few hours after they decorated the room, I called and asked that he go to the hotel and get all of our stuff and close out the account, since Daylon was being admitted! :( Can you believe it!? Brian sent me a text of what the room looked like, so at least I got to see what it looked like! LOL!

We've spent the weekend in our room, trying to stay out of the cold, enjoying the Christmas season and trying to keep the kids healthy....not sure if it's working though. Caleb seems to have a stomach bug now. Ugh.

NEW GLASSES!

Daylon is sitting up now for maybe 20 minutes before he tires out, leaving his PT goal of 6 minutes by Christmas in the dust! He loves to play in his activity center several times a day and doesn't complain at all about having to put weight through his legs. He says "Mama" or "Mom" for me, "Dada" or "Dad" for Brian, "up" and "uh-oh!" this week. Each week his vocabulary comes and goes. Last week he was saying "Gotchya!" but I haven't heard it in days. While he was in the hospital several doctors asked if anyone had talked to us about his lack of talking. He RARELY babbles, which I'm told is a tell-tell sign that's something's off. He is picking up American Sign Language a bit. He signs "Mom", "Dad" and "up" which of course are words he can already say! LOL! Silly kid! He understands a bunch though. He responds to and or tries to sign, "sing songs", "cute boy", "toy", "drink", "Daylon", "stories", "kisses", "I love you"and "Mickey Mouse". He can also point to his eyes and nose when asked. Regardless of what the neurologist thinks, I think he's doing okay for a kid his age that was unconscious for two months and has under gone everything he has. We're just taking it all one day at a time.

Okay. Sorry. I know this was a lot to spill on you all at once! We're doing good and taking everything one day at a time. Thanks for all of your love, support and concern. We love you!

These two are such cute buddies!!

at Elle's memorial: our kids and Chloe

I walked in on these two cuddling with a book and I had to snap a shot!

Daylon's surgeries went great...no intubation AT ALL! woo-hoo! He's doing pretty good. Some pain, but still the toughest dino around! My phone won't let me type in text box, just in the title box. More tomorrow! Just wanted to check in so you all didn't worry! love, Jenn

2010-11-17T01:03:00.001-06:00

Day +143 surgery--part one

2010-11-15T20:04:00.001-06:00

Today was another crazy day. Here's the breakdown:
-this morning we waited around and were then told his surgery wouldn't be @ 7:30am and instead they would fit him in in the afternoon.
-we then went down to dialysis
-after we were there 20 mins., the Dr. called and said we need to come to the OR if he's going to have surgery today
-stuck in dialysis, they give us a time of 12:20pm tomorrow for surgery--not thrilled at this point
-got to the dialysis unit at 9am (keep this in mind) and clots clouded the machine.
-switch out lines, only to find out he has several clots in his central line.
-big opps moment-clots pushed into line and we watch for heart issues, meanwhile, I'm about to have heart issues
-at ONE O'CLOCK, Daylon is hooked up to the dialysis machine to start his 4 hour run
-it's decided that Daylon will also get a new Hickman and PIC line during surgery (Dr. Tolar is out of the country so he's being over ruled)-praying that the extra chance of infection won't come to anything
-Daylon's blood pressures climb to 170/100(due to infection from his tummy? Pain?) Again, I get heart palpitations :)
-dialysis ends at six o'clock and we emerge from the dark, no access to service, basement
Well, that brings us to now. Daylon's set up in his hospital bed and sleeping.Carin from Child and Family Life Services dropped off some toys and a mobile. He got to playing with them right away. It was nice to see him smile and play. He's been in a lot of pain today and it's always hard to not be able to pick him up and comfort him during dialysis. For being down there nine hours, he did great. He's such a sweetheart.
He has yet another corneal abrasion and his skin is starting to break down. It's typical transplant stuff...when there are so few cells (because it's so early after his transplant) and he gets a really large wound (ie:his belly), all the cells rush to the wound and the rest of his body suffers. He should still be able to heal quicker (benefit of transplant) and things will hopefully return to normal. I hope you all had a great day! Thank you for all your prayers! Sweet dreams.

Day +142- surgery news!

2010-11-14T19:50:00.001-06:00

Yay! I have good news! Daylon has been put on the surgery schedule for 7:30am tomorrow!! I'm so happy to have this done with once and for all! Thanks to the antibiotic drips, Daylon's fever is gone. He's been fussy off and on most of the afternoon, but typically just before one of his pain meds is due.There's debate between the staff whether there's fatty tissue or puss coming out of some deeper parts of the sore. As of this morning, the cultures taken from the sore were still peneding...the lab is slow on the weekend. The biggest concern for tomorrow is intubating him.Last time he was intubated, they said that there was so much scar tissue that they couldn't fit the camera down and had to do a blind intubation. In the process, they injured his throat. While I know that tomorrows intubation will also be blind, I pray that no harm will be done.
On a whole other topic, can I just say how AMAZING you guys are. I've read the comments that throughout the day as they have come in and they've helped to lift my spirits so much! Thank you for that! I feel so much better today! :)
One last bit that I forgot to mention:it snowed on Friday night 5-6inches (depends on the weather person you listen to)! Crazy,huh?! Back home it's supposed to have been in the 80's...what a difference! The sun is setting now at 3:45-ish now too! Winter is coming!
I'll try to post tomorrow, even if it's quick, to let you all know how things went.sweet dreams

PS- sorry for another pictureless post. Still no computer, but I did figure out how to post on my phone! :)

day +141- back in the hospital

2010-11-14T01:49:00.002-06:00

Today was emotionally draining and I'm ready for tomorrow. 7am this morning Daylon was screaming and blood was rolling down the side of his tummy while I changed his dressing. Brian couldn't even look at his belly and I was done. It was one of those moments where you either have to start bawling or start yelling, but some emotion is going to bust down your door? It was that moment. I called thw hospital, asked for the Pediatric Surgeon on call, and then told him (without losing it, I might add) that he WILL fix this giant hole TODAY. Yesterday he was in this guys office at 10am (yeah, no date hour :( )and they said he'll have surgery at some point next week. Today he told us to take him to the ER and he would look him over. Long story short:he didn't look at his bare skin, he refused to do the surgery this weekend (b/c the proper EB trained OR staff isn't all on) and he said he would try to squeeze him in sometime during the week. Oh! He also said that if I wasn't able to change the dressing for his whole stomach,then he could be admitted so the nurses could do it. :/ It was like he didn't get that this kid was covered from the neck down constantly until 2 or so months ago! Sorry. Guess I'm still mad. Anyway, I said that he needed to help him on Monday for sure then and he said he would try to fit him into his schedule Mon or Tues.if he were admitted,but he can't promise anything. I took the offer and emailed Dr. Tolar on the spot. I PRAY that he comes through for us and tries to throw his weight around to get it done asap. It's nice to see everyone on 5D. They're so wonderful. Everyone showers Daylon with attention and they're fuming right along with me. :)
Daylon had dialysis today also. I was lectured for most of it by 6 different dialysis staff about how he shouldn't be on IV drugs and how I'm ruining his line by meds through it. They poured on the annoyance like there's no tomorrow. I wanted to just say, "Are you joking? You're mad at me for giving him his meds?!" They refused to allow me to give him his CSA because "he can miss it" and his Keppra (seizure med)because "it can wait". I've been like a volcano all day and I think you all are paying for it with my vent. Sorry.
Anyway, Daylon is now also running a fever of 103.7 and his belly is so raw and eaten in parts that what looks to be his fat is starting to poke through in the areas where the most skin has melted away. Also found out that his bile PH level is one...so, pretty much pure acid.
The surgery will take about two hours and Daylon will be intubated and paralyzed for it. Please pray that everything will go well in surgery that he will be extubated immediately afterwards. I put on the "Pandora" website so Daylon can go to sleep. The songs haunt me. They're the same 20 or so songs that played for Daylon when I had it on when he was in the PICU. So many horrible memories are flooding my mind as I type. I think it's partly to blame for my fear and hysteria in this post. That and today while I was changing Daylon's dressings Caleb said:
Caleb-I'm gonna be sad when Sadie's and Violet's birthday comes (Dec. 3rd)
Me- Why?
Caleb-because that's when Christmas is coming and Daylon's going to die and we're going to go home.

We told him that Daylon would be fine and he was coming home with us. I know he's probably just confused because unfortunately,two of his closest friends here had their EB baby die and then they leave us and go back to California. He knows we're going home right before Christmas, so I think it's how he sees all this. I'm sad that my kids have had to experience so much pain in their short lives, with so many grown up thoughts and concerns. His words have weighed on me all day.
He has this surgery and then his brain surgery that I'm nervous about. His stomach is more than likely infected as well, which will be another challenge for him.
Thank you all for helping to carry us through our trials in prayers and friendship. It means the world to us.
Thank you to all of you who attended the blood drive today...whether it was in California or New York or somewhere in between, thank you. Sweet dreams.