Sunday, October 31, 2010

Day + 128 :News, news and more news

Hey Everyone!
There's a lot to say tonight.  I actually had a lot to say last night, but I needed to process everything to keep from rambling. :0) I'm good at that.

  First, I want to start off with some bits of happy. This Thursday, the RMH staff hosted a Halloween Party for the families here. The kids had such a great time! There were games, a scavenger hunt, spook alley, trick-or-treating, caricature artists and more! Every single time I think that the Ronald McDonald House can't possibly get any better, it does. The staff absolutely goes out of their way to make sure that the children here, who all have so much sadness in their lives, experience happiness at the same time. This is such a great place. Here are some pictures from the party. ...Oh! Caleb's not in them because literally 90 seconds after we got his Superman costume on him (and he was dang cute!) he threw up all over himself and the kitchen table. That's right. On the table. Where we eat. Ah. Good times.
FYI: Keira is a jellyfish, Violet a cowgirl and Sadie a ladybug

twirling her tentacles

 I only started this blog when we started our BMT journey. To allow you to better understand the last year, and since I speak best with photos, I give you Daylon....

Daylon Halloween 2009: Our little Monkey
He only wore this costume for about 10 minutes maybe, but I had to dress him up for what we thought would be our one and only Halloween as a complete family.

Daylon Halloween 2010: Daylon the Dino
Counting our blessings each and everyday.

On Friday RMH invited two families to meet and visit with Brett Favre of the Vikings and we were asked to be one of the families!! Brett Favre is the QB and holds several career records for the NFL. We got to chat with he and his wife for about 15 minutes before he went out to the courtyard to meet the other house guests. We got our pictures taken with him and he signed autographs for each of kids. It was so nice and yes...Brian was nervous. :)

Alright, so on to the nitty-gritty. Daylon had an eye doctor appointment on Thursday and we found out that he needs glasses (we already knew that pre-transplant, but they are actually going to do something about it now) which is common in EB kids and well, to be honest, in my family. We also learned that he had a corneal abrasion in his right eye. I know it'll probably sound weird, but that was a heart sinking thing for me. Corneal abrasion have been Daylon's nemesis until the Bone Marrow Transplant. It's been such a HUGE benefit of the transplant to see his eyes happy and pain free. I had noticed that his eyes were watery, but he had them open so I didn't think anything of it. As of this morning, Daylon now has a corneal abrasion on his left eye as well. This one, I know. This is one, like the old ones. Eyes closed, eyes and skin red and swollen, watery, and a fussy kid. I don't know if you've ever had a corneal abrasion, but I have and let me be the first to say, they HURT. Like, all you can think about, kind of hurt.
  On Friday, Daylon and I went to the BMT clinic to have a nice, long visit with Dr. Tolar. Daylon's million appointments and Dr. Tolar's schedule have been conflicting and with the exception of the biopsy day (where he saw Daylon awake for about 2 minutes) he hasn't seen him since Daylon was released from the hospital. We talked, and talked some more. The easiest way I can think about going over this is to do a Q and A straight from the notebook I use. I'll paraphrase Dr. Tolar to the best of my memory (and notes!). Here we go:
  • Q:Does Daylon need a kidney transplant? Dr. Cashton is telling me he does.- A: Absolutely not. (whew!) He does not decide that. You and Brian and I will decide that much later. I won't allow it when he's on such a high dose of CSA . (Soooooo happy to hear that! I won't mention everything that was said, but lets just say that Dr. Tolar and Dr. Cashton have been "speaking" regularly about Daylon)
  • Does Daylon have GVHD?- A: No. A rare side effect of Bone Marrow Transplants is severely sensitive skin and that is what I believe he has. Switch to sensitive cleansers, avoid the sun, etc. until we can pinpoint the allergies he has. (Does anyone else see the irony in this? Ha, ha! I've gotta laugh at this one! We did the BMT for sensitive skin, and now he got a whole other type of sensitive skin...well, at least the latter is better) Once the day +100 blood tests come back that he's 100% engrafted with Caleb's cells still, then we'll start his CSA wean. (YAHOO!!!)
  • Q: Daylon is throwing up around 10 times a day and we aren't feeding him. It's a lot of dried blood, with some new blood at times. Why is this happening? A: I think he may have developed an ulcer. (After checking his G-tube diaper's drainage) That's a lot of blood for so far post transplant. We'll give you a bottle to take home and save a sample of his morning vomit before you come to clinic and we'll test the PH levels. I hate to scope him, so this will be our first step.
  • Q: I want to get him off the g/j tube again, but to do that the nutritionist said he needs to practice eating. This is becoming so difficult for us, since everything we give him (on his good days) drains out from his g-tube site before he has a chance to attempt to digest it. Not to mention that then it has been mixed with stomach acid and burns his skin. What do we do? A: (stare for about a minute) I don't know. Let me talk to a few people and I'll email you when I think of something.
  • Q: You told me early on that he has the T-cell count of someone who's one year post transplant. If the T-cells fight off germs and he's on CSA (an immune suppressant), does he now have a lower count? A: It doesn't lower the number of the cells, it weakens their ability to fight.
  • Q: The Neurologist told us that Daylon will never talk again. What do you think? A: I know. He told me that too. I think that it's important to remember that it they were the people who told me that I (Dr. Tolar) should quit torturing Daylon and take him off life support. When we didn't and he was extubated, they said that he would only be able to partially move one side of his body and he would lie in a vegetative state his whole life. (Can I just comment here that I'm so glad he didn't relay all this to me at the time of. I could NOT have taken it.) We believe in Daylon and we have to continue to believe in him. (There's about 15 minutes of talking here which I will basically sum up by saying that he said he doesn't know if Daylon will ever talk again. The signs of speech should be coming on quicker than they are. He thinks that it is time that we consider other forms of communication, specifically American Sign Language. He gave me the name of a book by Oliver Sacks on raising a deaf child, that should help. He said that if he's meant to talk again, he will. He may be able to answer short replies ie: yes, no, school, etc. and have trouble with sentences....who knows. He can answer with a word on occasion, but I guess it also has to do with mouth movements and sounds. either way, there's still hope.)
  • Q: When can we go home to California? A: He started off by saying that we'll decide in January, but then asked what I wanted. I told him I liked the Christmas idea he talked about a few months ago . The plan now is that he'll decide mid-December, but if we need to stay longer, then we can still go home for a week at Christmas and they'll help us arrange dialysis back home! Yay! I really, really want to go home and stay home in December. The biggest factors keeping us here are nutrition (he's at 23 ml/hour and needs to be at 48ml/hour) and his brain.

This wasn't in my notes, this is all him: Dr. Tolar and the Neurologist feel that it is in Daylon's best interest to have brain surgery to drain the extra fluid and blood.  When Daylon sits upright his face scrunches up and he fusses or cries more often than not. They believe that the fluid is shifting in his head and putting too much pressure on his brain. Besides preventing him from progressing in his milestones, it puts him at an increase risk for additional subdermal hemotomas and/or stroke. What they would likely do is drill into his skull so that the wounds are minimal. They're working on figuring out how to close the wounds without sutures, since they slide out. He asked for permission in contacting a neurosurgeon and said that if we disagree, than that's it. We have the final say. I really like that about him. I mean, I know we have the final say, but so often, it doesn't feel like that. If I say, "well, what ever you think" (and trust me...I have), he'll tell me, "You're the boss, so it's what ever you think!" Anyway, the point is, I don't know what to think. My first thought was, "go" but I'm scared. Brian and I both agreed it was okay to consult the surgeon, and I think overall, we know it's the right thing. Daylon is so uncomfortable and his life is in jeopardy. The poor kid wants to be near us, but doesn't like to be held very often unless it's like a newborn. I hate seeing him so miserable. He's happy laying down and some days he does well propped up, but those sitting days aren't often. How can we protect him too, from normal childhood bumps on the noggin or jerking stumbles? The idea of someone poking around in his head is unnerving to be honest and the risk for infection is already so high. Like I said, I'm scared.
  When I came home from the doctors, my girlfriend from church visited with her little girl. Her daughter is 10 months old and slept for a while we talked. When she woke up, I watched her lift her up from under her arms, give her raspberries on her neck, take off her sweater by tugging on the wrists of her sleeves and set her on the floor to play with my older four kids. She took off crawling and laughed at Caleb chasing her. I am genuinely happy that there are so many beautiful, happy babies like Annelise in the world, but for the first time in probably a year, it made me sad. I can't hammer down what I'm sad about. I guess part of it, is seeing what a kid 5 months younger than Daylon can do, that Daylon has never, ever done. Watching the ease that she and her mom could interact, especially after naptime, I'm sure is part of it too. Maybe it's jealously, but in my mind, jealousy has a kind of hostile connotation. I'm not resentful at all, just sad. I'm sad that I have to carry Daylon like a fragile family heirloom and that I can't hold him without a fluffy blanket between us. It makes me sad that if I snuggled him, his arm would press up against his body where his Hickman is and tear is skin or that movement could make his G-tube could come out. I'm sad that when I move him, I have to watch out that I don't step on or pull any of the cords coming off his body. I'm sad that every time I start to see the break that Daylon deserves to get, some other life threatening thing comes his way. I'm sad that Daylon has never crawled around on the floor laughing while Caleb chased him. To be completely honest with myself, I guess I've been a little sad since Bella died. It hit close to home. Bella and Daylon walked side by side through the trenches, when one of them would take a hit, the other one wasn't too far behind. Today my heart hurts. But that's today and I'm consciously reminding myself that that doesn't have to be tomorrow. The only way I've made it through the last 15 and a half months is by faith.  Have you ever had a trial that was so long and trying that you felt like you can't catch your breath? You have to push yourself through each day, without allowing yourself to think too heavily on the subject or else you might not make it? I guess that's where faith really comes into play. You know the great thing about having faith? I know that I am never given a trial I can not handle and I am never alone. I know that I can pray for guidance and comfort and listen to know what I should do and then trust in God. These new additions to our trials and Daylon's just gives us that much more of an opportunity to communicate with our Heavenly Father.  When I was first pregnant with Daylon I heard a quote that I absolutely love :
  "Come what may, and love it....the way we react to adversity can be a major factor in how happy and successful we can be in life"- Joseph B. Wirthlin

 I guess I should probably get off this blog and hit my knees. There are so many benefits to journaling this journey for you all. When I started this post, I was feeling so overwhelmed with life and to be honest, cried through part of it but now I feel hopeful and refreshed. Thank you  for being my "listening ear" and Daylon's cheerleader. It's such a comfort to know you're there for all of us.
  Before I forget, did any of you take my EB awareness challenge? If you have, I'd love to hear how it went! If you haven't, please talk to someone about EB, who knows? You may create the ripple effect. :)

A tribute to Bella, for EB awareness week: Daylon's fabulous socks of the day

Sweet dreams.
We met with Nurse Erin (Daylon's Primary Nurse) at Dairy Queen just before she took off for her move to Chicago! We'll miss you Erin! See you in June!

Thursday, October 28, 2010

Day +125- Long time no talk to!

  Hey everyone!
  I'm so sorry for the delay in posting! Thank you to those of you who emailed, inquiring after Daylon. Our computer broke...AGAIN..(UGH! Toshiba!)...and we are without a computer for the next 3 weeks until they mail it back to us. I'm able to post tonight courtesy of our friends, neighbors and superheros, the Pops! Thanks for letting us borrow your computer guys! We owe ya one!

Catching up with the Edlings:
We all attended a beautiful memorial for Bella. We had to buy Daylon a suit since all he usually wears is inside-out onesies!

We went to Hidden Falls on a picnic with the Pops and the Ringgolds. I need to apologize ahead of time to the Pops...I had their family photo with the all the other photos to be downloaded onto the post and I apparently reached my year photo max with blogspot and they randomly picked a picture not to unload and that was the one. I've been trying for an hour to upload it by erasing pictures, but it's not working. Sorry guys!

L-R: Tim, Brian and Steve skipping rocks

Yes, that would be our son who decided to take off his shoes and socks and go knee deep in the Mississippi River when it's 45 degrees outside! He about gave me a heart attack! Funny story: He left his converses on a rock and we had no clue. We searched the house for his shoes and he eventually told us he left them behind.  Five days later the kids and I went back, just to check and guess what!...they were still there!

Tim's sister, Tracy was down from Spain and we got to visit with his mom too! They are such wonderful people!

 Daylon has been doing fairly well. This weekend the Jen and Bart Winkler let us use their cabin in Turtle Lake, Wisconsin to celebrate the Caleb's (4 on the 16th) and Keira's (6 on the 26th) birthdays since we weren't able to have a normal party here. A SUPER HUGE "thank you" to the RMH staff for all the presents they gave the kids! They spoil them rotten! :) You guys are the best! The cabin was absolutely amazing, but I'll get to that later. Daylon was such a sweet little boy the entire time. He hardly cried and loved taking in all the new surroundings. He played so nicely with his toys so I could cook and he loved hanging out watching tv being held. What a doll!

Grandma and Grandpa De La Cerda and Aunt Emily were able to sneak away to WI for the trip too!

holding Daddy's hand

 We spent some time in Stillwater, MN. I LOVE that town! It's so cute. It has a bunch of old fashioned looking stores and lampposts. It's a great place to window shop and walk down by the water. We ate at Leo's malt shoppe which is this cute little restaurant with ruby red booth and chairs and hamburgers and malts made fresh from the back. I felt like I was living in the 50's!....I love that!

The kids are so excited for Christmas! They say Christmas is for children, but I live for their excitement.

Teddy Bear Park. Everything is done up in trains and bears. By far, one of the coolest parks we have ever visited!

Keira and her birthday morning donut-post candle
  Daylon's creatinine levels are still on the rise unfortunately. They're nearing 5 (should be .58 or lower) and this far out from transplant....well, lets just say it's not good. They have decided to hold out on deciding on a kidney transplant for a bit longer. We need to get the whole GVHD idea under control (meaning, does he have it or not) and then his CSA dose will go down and we can watch how he does and decide.
  The last 36 hours or so have been rough on Daylon. :( He's been vomiting a lot. I mean, A LOT. Twice today he threw up blood and the last couple times tonight it's been darker, so I'm assuming it's old blood. This happens every so often when the blistering in his stomach gets out of hand. He's cried, moaned and fussed the entire day. In fact, the only time I saw him smile today was when Keira was entertaining him. Bless that child.
She is such a wonderful big sister. I wish I could have taken care of my siblings like she does hers. Anyway, he's been in a lot of pain and discomfort and we needed to give him extra bumps of Ativan, Benedryl (for tummy troubles believe it or not) and two extra doses of Oxycodone on top of his normal meds. He's stopped peeing over the last week and only had one poopy diaper today (yep, I just went down that road! ). Normally there's several, so I'm not sure if that's a good thing or not.
  Dr. Tolar has warned us about the ups and down of the skin post transplant and how it's normal to see improvement come and go a little bit until hopefully, a few year post transplant, the skin stays improved. Well, right now Daylon's skin is on a bit of a decline. He got a little scratch under his nose, two of his fingers blistered under his nails and bled and a his groin area had a little bit of skin lift away. The stomach acid that drips from his leaky g-tube has burned the skin on his tummy and yesterday's throw up event (yes, it was an event) left his neck and under his chin raw and irritated. Ok, so I know I sound a little doom and gloom, but keep in mind, this is a kid who was completely covered from the neck down 4 months ago. His feet are continuing to heal everyday, which is HUGE. They were such a mess such a short time ago! This is just a bump in the road. :)
   Daylon had his Day +100 biopsies last Wednesday (a bit late, but Dr. Tolar likes to get as many kids done on the same day so the photographer doesn't have to come back and forth a million times). There were 8 biopsies taken (including one to test for GVHD) and they performed the blister test again. So, some things to remember: Pre-transplant, Daylon's first blister (there are three taken at once) started to form at 3 minutes with all three blisters formed at 5 minutes and 18 seconds. His Day +100 blister test: first blister at 16 minutes, with all three formed at 18 minutes and 42 seconds!!!! Can you believe that?! I am so stoked! This transplant is really working! I know it sounds crazy that I should doubt it working, but this is and has been are only option to save Daylon. Making the decision to come here has been the scariest and most stressful decision of our lives.  It would be foolish of me to say that we're out of the woods, or to think that Daylon's life isn't in danger anymore. It is and I know that we've/he's got a long road ahead, but it's thrilling to have the possibility of seeing him off to his first day of school, taking pictures of him on Prom night, or dancing with him on his wedding day. It has been one of the hardest things of my life to rock my baby to sleep every night, just staring at his sweet little face knowing that I would never see him grow up. Every day I wished him here with me on earth was another day of pain for him to live through. I don't know how to put into words the heartache that comes with raising an EB child, or any special needs child.
  You know the song "Away in a Manger"? This time last year, Daylon was very sick. I would cling to him and rock him for most of the night, since he hardly slept from all the pain he was in. He loved "Away in Manger" and it was in those months that I developed an attachment to that song and especially the third verse:

Be with me Lord, Jesus I ask they to stay,
close by me forever and love me, I pray.
Bless all the dear children in thy tender care,
and take us to Heaven to live with thee there.

This week is EB awareness week. I would like to ask each of you a favor:

Will you please share your knowledge of EB with one person, who doesn't know about EB? It can be a family member, friend, neighbor, the produce boy, anyone. If we can educate the world on EB, there would not only be more funding for a cure of this painful disease, but also more understanding of what these kids go through the respect they deserve would be given. It would be wonderful if a stranger could look at an EB child and not think that his/her parents abuse them (yes, it happens and it hurts), or quickly get up and move away thinking that the skin condition is a contagious disease, stare at fused fingers or torn skin on the face, or make comments about the smell of infection or open sores. These kids often feel alienated and lonely. They deserve to be treated like the children that they are. Some EB patients are living into adulthood these days and are fighting their own obstacles. Wouldn't it be great, if they everyone understood their condition and was welcoming? I know, it can be hard, but please open your mouth and share what you know. If you would like to learn more about EB please visit the DEBRA website. With your help we can cure EB.
Sweet dreams.