Day +56: Busy Day part I

Last night I stayed the night at the hospital for two reasons: 1. to be with my baby who was so very sick and 2. to make sure I had time to ask my slew of questions to Dr. Tolar in the morning.
Daylon continued to run a high fever until 5 am, after which, I conked out on my hospital cot, which I lovingly refer to as 'soft cement'. The attending visits start ridiculously early so my trip to slumberland was cut short. Anyway, Daylon did well most of the early morning but during rounds the doctors decided to do a chest and head CT on Daylon to see if they could spot anything that could account for his crazy fevers.

off we go!
By 9 am we were out the door and on our downstairs for the procedure. Daylon absolutely loved the rides! His nurse Rachel, asked the doctor who accompanied us if Daylon could start taking little trips around the halls and she agreed! Hopefully we'll start that tomorrow.

The chest CT showed that the back of both lungs were slightly collapsed, but they no one seems to be too concerned or surprised since it's fairly common in people who lay flat for a long period of time. So, the chest isn't the culprit... Next!

His head CT showed that his subdermal hemoatoma is "evolving". The swelling has gone done and the necrotic area of the brain is shrinking. To be clear; the brain damaged area is not shrinking, that area of the brain is. We were told that it's the natural course for this type of brain injury. As for an abscess or infection? None. Going back up to 5C...

While we were gone, Brian and two of the girls (Keira and Violet) came by to visit Daylon. Keira has been bugging us to take her to see Daylon for the past couple days, so Brian had time today to bring her by. I guess Violet had a heart attack when she found out they were going without her, so Brian brought her along too. When they arrived at the hospital and saw the empty room, Brian told the girls to take a seat and wait it out. Apparently, Keira was very concerned about Daylon's where abouts and was unfamiliar with what a CT is (obviously) and Brian told me she was very anxious. He didn't worry about it too much and got busy with something else. After a few minutes, Brian spotted a note Keira had written on the board....


It's a "D" and a question mark. I know I'm her mom so everything she does is cuter to me, but I had to share! It melted my heart!
We came up and visited with the girls and then Brian took them back to the RMH for lunch. Dr. Tolar got the page that we were back and came in for a chat. I had several molecular EB questions and one neurological question. I explained to him, what I explained to you all last night. Daylon doesn't consistently respond, our play with toys, or smile. How much is meds and how much is the new him? He told me simply the same answer he's told me before: I don't know. He said that if the same brain injury had happened to he or I, we would be a vegetable. The fact that he's moving is good. He told me he has hope, which is always nice to hear. I go through these moments where I want to hear the cold truth and then when they give it me, I think, "Whatever. Daylon can still prove them wrong. He has already." I'm fickle. What can I say! :) I guess mostly what I want to hear is, " Oh, he'll be better before you know it!". All good things take time. Deep down, I know that. :)
Dr. Tolar also told me that he wanted to do a lumbar puncture (spinal tap) to check for a series of possible infections. The open time slot was for 4pm. Over the few hours we tried to squeeze in as much as possible since dialysis was going to have to wait. The occupational therapist came and Daylon practiced tracking with his eyes, reaching for a toy stick (he didn't try at all with his right hand but he made a bunch of hardy swinging attempts with his left), and she stretched out both arms. We also noticed THIS!!!! (look down)

CHECK OUT THOSE EYEBROWS!! It's like these two little black caterpillars crawled up on his face and made a home! CSA is a drug he's on to kill his immune system so his body doesn't attack Caleb's cells. A side effect is insane hairiness. So, you decide.....

CSA?

or....

Edling genes?

he looks like Steve Carrell in this picture!

So , he went down for a spinal tap, which is an adventure for any kid, and so far everything has come back negative. This is a good thing. As long as everything else comes back negative, they'll call it a fluke and keep moving forward. The last result will take a few days.

Dialysis ened up being cancelled for the day (they would have ended after midnight) but he'll be the first patient on the docket tomorrow morning. Ah, another bright and early day!

By the way, thank you for your comments from yesterday's post. Several of them moved Brian and I to tears and we could feel your love in each of them. We love you all. Please continue to pray for our son. We're so grateful!

PS- Remember how I said we spent some hours wasting time? Well, check the post below. We have a bit of a surprise!! (I would have posted it all together if I could figure out how to have video and pictures live together on my posts in harmony! ) :)

busy day part II

This was one of the happiest moments of my life. Nurses and doctors were running in to see him laugh and then stood there crying right along with us! In the words of several members of the medical staff, "this is why I do this job."

Heavenly Father has heard our prayers again. Another miracle.

PS- Dr. Tolar was paged :)

Day +55: just thinking out loud

Daylon laying on a new blanket to help with his fever and his nurse, Rich plugging in the blanket

I know this is a blog that is open to anyone in the world that wants to read it and I think about that a lot. I decided to start this blog to keep our family and friends in the loop (because to be honest, I hate repeating a horrific story a thousand times with that burning lump in my throat. Not to mention, I'm not exactly an open book.) but it's become a therapeutic journaling session for me too. The thing is, I have to force myself to be positive because I know our moms and aunts (and Daylon's aunts) are going to read the post, and I hate when they cry. If I didn't blog, I would sit here and worry about the worst possible scenario and feel trapped by this tiny dungeon that is room 403...I'm a mom. That's what we do. We all have doctorates in "Worry and self guilt". It may take me 3 hours to finish my post, but I will see the light at the end of the tunnel, and I will hit the "Publish Post" button feeling better about life. So, that being said, I have a feeling that tonight's post will be a bit of a ramble, but no worries. We're still hopeful and things are still good. My mind is so full of thoughts and I'm unable to organize them. I'm just going to let them bubble over the top and spill out onto the keyboard. Hope it's not too dramatic.
OK. Here we go....
Today was a crummy day. Wednesday was supposed to be our big moving day back to 5D, but that's not happening. The past two days after dialysis Daylon's heart rate climbs and climbs and his blood pressure just falls and falls. His heart rate will just hang out in the 180s (instead of 110s) and he's needing 2 blood pressure meds to help keep his blood pressure up. He's also been running fevers from 102F to 104F for 8 or so hours after. Question: How do you go from a 103F to 98F just because?...for several days! Not one single blood test has come up positive for a bacteria or fungal infection. What gives? No one has any clue what is going on. He's on 4 antibiotics and it's the same thing everyday. So weird. Plus, in the last 36 hours he has had huge out-of-diaper diarrhea episodes. The kind where you have to change out bandages and linens. Not fun. Anyway, he's requiring one on one attention from his nurses, so we'll have to hang out on 5C a bit longer.
This blanket has temperature regulated water being pumped through it to help lower Daylon's fever from 104.2F

Today we also found out that our stay here in Minneapolis, will be for quite some time. Our day 100 is October 2. Providing Daylon is in good health, day 100 meant "Good-bye, Minnesota!"! Well, the BMT doctor today said that she thinks that quote: "Maaaaaybe you guys can go home in time for Christmas. Dr. Tolar is very conservative though, so who knows.". Oh. My. Goodness. That one felt like someone hit me with a pillowcase full of bricks. Minnesota is great and we absolutely love the Ronald McDonald house, but I want to go home. I want to go back to real life. I miss my crazy, run around town with five kids who need a nap in tote life. You wanna hear something crazy? I miss palm trees. I love these gigantic mature trees up here, but those ugly ol' palm trees mean 'home'. I know this is becoming a rant and I'll stop soon, I promise, but! DO YOU HAVE ANY IDEA HOW COLD IT GETS UP HERE!!!!? I've had nurses tell me -40! How am I...what will we.... I just...ahhhh. Idaho was -20 and it was painful (literally) to go outside to get the mail without 5 layers of clothes. I can't even imagine. You'll hear more about this in a few months. I guarantee it. :)

Lastly, things are weird with Daylon. I know he's on a lot of drugs still for sedation and pain, and from what I hear, he's still got a ways to go before he's off. He's also going through withdrawls and recovering from a six week muscle sabbatical. Still though, I'm getting worried. Daylon is like a giant limp noodle. I knew that he wouldn't have much muscle control, but he's not even close to being the same kid. He doesn't smile or laugh, he'll stare at his mobile and these little lights we can put on our fingers, but he doesn't really have an interest in toys, and sometimes I wonder if he knows who we are. He stares so much of the day at the ceiling or sprinkler or something. Sometimes I think he responds to Brian and I, but then there are times like tonight where I lift him out of bed for a moment and his head just falls to the side and he stares blankly at nothing. I started talking to him to get him to turn his head towards me (he turns his head all day long, so I know he's capable). Nothing. I stated calling his name. Nothing. One last attempt which was kind of a sing-songie vocalized prayer, "Daylon! I need to know you're in there. Respond, Son.". I'm not sure if it was Daylon taking the 90 seconds he needed to gather his strength to respond or not, but I felt like it was a divine moment. Without moving his head, he looked at me from the corner of his eyes. It was only a few seconds but I really needed that moment of eye contact. I was having a bit of a panicky moment. I've really tried not to think about the what-ifs of Daylon's neurological well being, but tonight I had such a hard time trying to force them from my mind. I think the events of the day just weighed on me and I was starting to crumble. The day was busy and instead of praying for comfort, I let worry fester. I feel that Heavenly Father heard my little prayer, knew what my concern was and answered my prayers. It was a reminder that the road is there, it's just a long one. Once again, this blog has come to my rescue as a therapy aide! Things start to make more sense when I write them out and the blessings of the day become so much clearer.
Thank you for being our friends and readers through all this. Thank you for all of your prayers and well wishes for Daylon! Sweet dreams!

day +53

Our Superstar!

The sun is shinning, the breeze is blowing, and things are looking up in room 403! It's a good day. Daylon is impressing everyone with his determination to prove every doctor wrong. I love that.

Dialysis has become Daylon's only obstacle in the last few days. His dry weight (normal weight) was 11.6kg and they've not been able to get him lower than 13kg. The problem is, everyday, they try. The daily goal of a kg is a lot for a little body, especially when there's not a ton left to give. His blood pressure ends up tanking and they're forced to pull off early. Afterwards, his soft spot is sunken disgustingly deep, his heart rate is up in the 180s and he's ridiculously weak. We've had several chats with the doctors over the last 72 hours, and they've decided to try to maintain a 13.4kg weight! I'm so excited to see what Daylon will be like after dialysis today! I'm hoping that he'll have a similar amount of energy that he did this morning.

This is a florescent picture of Dr. Tolar's skin (right) and Daylon's skin before transplant (left).The red line is the junction where the epidermis and the dermis meet. That's where the Laminin Beta 3 is. As you can see on Daylon's skin, he had very little. Typically there is none, but his body was attempting to correct the deficiency. In the words of Dr. Tolar, "There was some, but not enough to help". Ok, so, no Lamin Beta 3 = Junctional Herlitz EB. We should be getting back the 28 day Laminin results soon, which will show if the transplant is actually working.

In the middle of the night on Saturday, I was able to get him to hold his head up for about a minute or so. Admittedly, he looked like a bobble head, but hey, he did it! The best way to describe his motor skills right now, is to say he's like a gigantic newborn. It is soooo difficult to handle him. He's 35 inches floppy dead weight...with fragile skin. Getting him out of bed is a toughie, but once we hold him...man, it's the best! He just snuggles into you and falls asleep. Last night after an AMAZING bandage change (this kid's skin is awesome right now!) we attempted to put a onesie on him to try to prevent him from being able to grab at his g-tube. Ha! That was fun! We were barely able to snap the middle clasp, but it worked! I can't get over how he's grown. He's definitely our tallest kid so far. Keira has always been a taller kid, but she was 3 feet at 18 months. He's an inch shy of 3 feet at barely 13 months.

A rare peek at Daylon's exposed face

The exciting thing, so far for the day is big arm movement in his right arm. Daylon started all the therapies (speech, occupational, and physical) 3 days ago. All of it has taken place while he is still lying in bed, but I think he is getting stronger. Doctor Tolar is really excited about all the improvements regarding his neurological issue. Daylon is tracking with his eyes, making some sound (last night it was a decent volume and looked like an attempt to talk!!), and moving. These all things that they doubted he would be able to do.

We're looking to move back to 5D on Wednesday. He just needs to calm down during dialysis.

My sister-in-law, Jessica a.k.a. Jess, flew in today and will be here until Friday. We're so excited to have her visit! The kids vs. adults in almost 1:1 right now, which is wonderful!

Well, it's back to the baby, for me. Thank you all for walking with us in our journey! We love you!

These photos are of Dr. Tolar's skin (left) and Daylon's skin pre-transplant (right). This is showing Collagen 17 = Junctional non-Herlitz EB. As you can see, the red lines are about the same.

For those of you interested, here are the pictures from Brian's birthday that evening with our family.

Day +50: August 13th...Daddy's birthday!!

That's right ladies and gentlemen! I held my son!! The pictures aren't the greatest, but in my defense it was 3 in the morning! :) Anyway, I absolutely love that we can hold him now, even if it is in small increments. As I mentioned in the last post, Daylon's lung collapsed a few nights ago and then perked back up. On Wed. night his chest x-ray showed that his lung had collapsed once again. The newest members to join the "Daylon Edling Care Team" is Pulmonologist crew. They have become MVP players around here lately. Not a chatty group though. Whatever, has long as they get the job done. So, they added two new meds to the nebulizer treatments to help induce a cough. That's where the holding comes into play. He gets the treatments added to the nasal canula, while we hold him. When they're finished, we do a little pounding session on his back ( I know, not good. The kid needs to breathe though and they're softer than the normal BD) and then RT does a deep suction with the Red Robinson through his nose. It's not pleasant but it helps. Last night's x-ray showed the lung was up! Hallelujah! He's still SUPER junky and needing to take body moving breaths to breathe, but he's blood/oxygen saturation in 100%. Actually, even with the collapsed lung it was 100%. This kid is amazing. He's fightin' this for all he's worth!

Dailysis hasn't been very successful. Today they got 400cc off which is not much compared to the 1400 they were once getting off. Today there was talk of moving his dry weight (natural weight) because he hasn't budged in 2 weeks. It has been a while since they got that weight, so it's time.

Today Daylon also had surgery to replace his g/j-tube. It's just a temporary fix, but the good news is they did it without needing to reintubate him!!! Woo-hoo! Unfortunately, the button is gone and this honking tube is in it's place. When he gets the real surgery they'll put the button back on him.

One last bit of Daylon news: Houston we have sound! We heard a teeny tiny little cry nose for about, well, maybe a full second when he was being deep suctioned last night! I'm am sooo happy he has his voice! I was beginning to think it was permanent!

Today is Brian's 30th Birthday!!! We opened presents and then grabbed some sandwiches for a picnic. We went on a mini hike (my mom had us in stitches the entire way with her complaints of how she's too old for these steep of hills) and had a picnic up at the top. Afterwards, Brian and I went back up to the hospital to spend some time with Daylon. Tonight we have more family plans which I will not mention since he will read this before it happens! ;) Here are some photos from today. PS- I messed around with some of the last photos with this free 30 day trial download from Corel Pro X3. Check it out! It's sooo fun!

BIRTHDAY BOY!!

Happy Birthday, Brian!!

Day +48: Big day!!

Hey Everyone! Daylon has had quite the crazy day! Ready? Buckle up!
So, it was Brian's night to spend the night and thankfully, Daylon was more comfortable last night. This morning in rounds the doctors came up with two new goals for today:
1. Wake Daylon up
2. (hold on to your hats for this one) Have Brian and I (or "mom" and "dad" as we are more commonly known around here) hold Daylon!!!!
Woo-hooo! FINALLY! It's been driving me nuts watching him be so scared and all I can do his hold his hand. He's a baby. Babies need to be held, ya know?
All of the bucking and wiggling has caused is gaping whole to become a ditch. A ditch with springs is what it seems like. The g-tube pops out, we drain it, put it back in, bandage the area and opps! 90 seconds later it's out again! I asked for Dr. Sulsman, who's the surgeon that has performed several surgeries on Daylon to be paged. He came up with his entourage and evaluated Daylon. He said that he needs to have surgery again to fix the damage that has been done to his stomach, then they'll sew up that spot and put in a new g/j-tube somewhere on his tummy. Poor, baby. The only problem is that he doesn't think Daylon is strong enough for the surgery just yet and he needs to figure out how they can perform the operation without a paralytic. If a paralytic is used then they would need to intubate him again, and well, that's not possible at the moment. He said he would talk to the BMT doctors and let me know tomorrow, when he can have surgery. For the time being a PA is going to come in and give it a temporary fix when they replace the j portion of the tube tomorrow.


These pictures are worth a thousand words!! Brian got to hold Daylon this morning (I was at RMH) for the first time in 6 weeks!! Look at how huge Daylon is on his lap! He's barely 13 months old! I think he's grown! I got to hold Daylon to for 5 minutes or so before we had to put him in bed again for his chest ultrasound. Speaking of, the ultrasound showed that Daylon's right lung is collapsed due to a clog. What's with the right side of his body?! The thought is if he we move him enough and stimulate some decent coughs he can dislodge the clog. Outside of that, he's breathing great! He's oxygen saturation level at this moment is 100% and his blood gases are coming back in average levels. Just goes to show you what a fighter he is!!
Dialysis has been a project today! Nothing has worked right with this machine or Daylon's lines. It's been an 8 hour project today to get a measly 400cc off. About an hour and a half in, they TPA ed his lines (put in a thinner to help clear up his line) and then let it sit for 45 minutes. During that time....

DAYLON WOKE UP!! I mean really woke up! He was looking around and relatively calm! You may have noticed I wrote, "looking around". Yep, he's not blind! He was making eye contact with Brian and I when we would speak to him and he even studied the nurse when she came at his lines. He was checkin' the dialysis machine out...it was great! He's by no-means his old self, but he's semi-coherent. I feel like we're slowly getting him back from this nightmare.

Daylon staring at his Daddy

Unfortunately, he started to get to get a little too wild after a half hour or so and they had to drug him to get through dialysis without setting off the alarms. Dialysis just ended and he's starting to wake up. I'm jumping at the chance to hold him! Sorry guys! I'm bailing! Thanks for all your prayers! We love you all!

if you get a minute check out this video of Daylon!

http://www.youtube.com/watch?v=MbJohHyTFOw

Day+ 47

So, being off the vent doesn't mean the rides over. The last 24 hours have been insane, but I'm happy to report he is moving forward. Baby steps, right?

After the extubation, he writhed and flailed and was just gasping for air ...all night. Once he was off, there was an hour of rest time and then dialysis for 5 hours. We were supposed to be able to hold him afterwards but no luck. He was keeping his stats up, but his lung sound quality was decreasing and by 10pm the attending came in to tell us that the 9 o'clock x-ray showed his right lung was collapsing. Brian went home around 11pm and the nurse and I pulled an all nighter with Daylon. He was comfortable in 20 minute spurts once extra meds were given, but mostly he squirmed and gasped. Honestly, this is a whole, new nightmare. Although it is a step forward, it's so hard to see him have such a hard time. Withdrawl is kicking in and he's uncomfortable and sick, not to mention, his brain is having to reteach his lungs how to breathe since they've been on a sabbatical for 6 weeks. I'm so nervous about his back tearing and breaking down worse. He's just so wiggly, I think some damage is inevitable. He kept having these hour long fits last night where he was going crazy (I mean, pin him to the bed crazy) and he knocked the ENTIRE g-tube out of his stomach! The hole was ripped open and is now unrealistically gaping. The nurse deflated the balloon, put it back in and inflated it up again, while I tried to keep him down. Within minutes, it was happening all over again. Eventually, the doctor brought in some gel-foam and we clogged the hole with it. He's scheduled for surgery on Thursday morning to have the entire thing replaced. The good news is, he is absolutely, no doubt, using his right side! Anyway, his left lung was also looking like it would collapse, but in a sudden turn of events, by his 7am x-ray, his lungs were improving. Yay! He also peed last night 250cc! For those of you who don't regularly measure how much you void, that's HUGE! Today they were also able to pull off an additional 500 with dialysis, so we hope to see the incredible shrinking baby soon!

I love being able to see his little teethers. The vent went in and he had eight. The vent came out and he has ten! His eye teeth are coming in! It's so funny, how with the all the other things going on, I plain forgot that he his only 13 months and little things like teeth popping up, are still happening!

His eyes did open for a bit last night, but he just stared at the ceiling smacking, well, nothing. The nurse said he's probably hallucinating. Lovely. They might start him on Meth-somethingorother and Ativan tomorrow to help him come off the meds. His evening nurse said it's like a prescription heroin and Ativan (he's already on) is a strong med in the Valium family. Apparently the two together work for longer periods, to help him not go through fewer ups and downs and they're less powerful than his other meds so that helps get him off as well. Thankfully, the doctors had mercy on him and ordered an extra one time dose of meds so he can sleep now.

The only real thing that concerns me, is that he hasn't made a peep. He hasn't cried, moaned, yelled, sighed, nothing. That's weird. The only nose coming from him is his lawnmower breathing and the occasional cough. Is this normal? The nurse don't seem to know and the only doctor to give me a straight answer chalked it up to a neuro thing. His voice is pretty deep from having JEB, especially for a baby, so I'm kind of wondering if maybe he's blistered his larnyx or something. Any ideas, guys?

I still can't wait to hold Daylon. Maybe tomorrow. Ben, one of our favorite nurses here, was telling us that with kids his age, there's typically a three strikes rule. The kids got an organ failure, no worries, you can turn around from that. Oh? A second organ is failing? There's still hope. Typically by the time the third organ fails, it's not looking so good. He counted out the problems over the last couple weeks: "-respiratory failure -kidney failure -liver failure -brain hemorrhage and then they added, oh and his heart may go out? Things didn't look good, but look at him now!".

I've been constantly amazed at Daylon's desire to fight for his life for over a year now. I never thought I could be in awe of someone so young. He teaches me everyday, to count my blessings. There's nothing like a child to put things in perspective for you. There's was a turning point in my life when I became a mother and learned that tending to these little people, with such big spirits, would teach me more about myself and life, than I had learned in last 20-something years. Little children are the link between heaven and earth.

Thank you all for loving and caring about Daylon and our family so much. Everyday we are touched by your words of encouragement and faith. We are being lifted up in our trials by all of you. Thank you.

PS- Changing subjects wildly--- I forgot to tell you guys! Bella's dad asked for a pee-pee dance to be done for her and Daylon peed. So, maybe if we all have happy running water thoughts for Daylon, Bella will pee! ...yes, we are going insane locked up in these 12x10 rooms. You have to have a good sense of humor about things to prevent the madness from setting in! :)