Thursday, July 22, 2010

Day +28: new skin is here!

Daylon on his new bed

Ok, so I flaked on my goal of posting everyday. Sorry. Can we count my last post as yesterday's? I posted yesterday...technically!


A quick review of how things are:


Daylon is up and down constantly. It's very frustrating but overall, I think he's SLOWLY getting better. Yesterday is blood results showed that both his kidneys and liver were up (bad) and today they were up higher still. Everyday, dialysis is puling off over a kg (2.2 lbs) but he hasn't peed for the better part of a week so the whole kg and then some is back. This morning is weighed almost 16 kg. He should weigh 11. The yo-yo effect has resulted in a HUGE blood blister that wouldn't drain properly. The blood had clotted (a first for him) and I had to call Dr. Metz his ped. dermatologist from CA to figure out what to do. Thankfully Dr. Metz returned my page, I sent her a picture, and she sent me a solution! She's amazing! After an almost 4 hour dressing change (Dr. Wagner sat in for part so it took longer) we were ready to change his pjs and blanket. A 5 adult team assembled and when we lifted him completely up off the blanket I was shocked (AGAIN!) to see my son's back. About 1/5 of his back is missing skin. I don't mean that his skin peeled back and it was bleeding, I mean there is nothing there but flesh. I couldn't even get his antibiotic creams to stick because it was to fleshy and wet. It's exactly like his nose when he was born. It's horrible. The worst part is, there's nothing we can really do. He has to lay on his back because of his breathing tubes and hickman. I am so lost. Any EB parents out there...HELP! I can use some advice! Yesterday was also fairly traumatic because we had to switch out the beds (scale broke) and he hand a hanging weight down. This simple thing which I explained in two sentences took 6 adults and a bit more than an hour start to finish. I left the hospital at 8:45 last night because I was so anxious I was sick. I feel much better now. :) Today, outside of the increase levels in his kidneys and liver it's been pretty quiet. I feel so blessed that there are quiet days that follow the crazy ones. Thank you for your prayers on behalf of Daylon and our family! PS- Pictures of Daylon's skin or in the post just below this one. I'm posting them at the same time just in case someone would rather not see them. Oh, and to answer someone's question, we own a Cannon Rebel T1i .
---Wrote above on Thurs. Today his liver is a smidge better and the kidneys a smidge worse. They're not to worried about his kidneys since he's on dialysis. STILL NO PEE!

7 comments:

Sara said...

for his back, try using mepitel coated with zinc oxide mixed with aquaphor or whatever you normally use, then on then on top of that use either regular mepilex or lite. The regular mepilex would help provide padding while he is laying there possibly preventing further breakdown.

Angelique said...

For the back, maybe Elasto-gel? It's a product we once got a sample of and it came with a brochure that showed it being used w/ a kid in the hospital who had no skin on the back of her head. I think we got the sample from Leslie Rader so she might know something about it.

Pati @ A Crafty Escape said...

We are lifting him up in prayer- hugs.

Elle's family said...

Have you tried~3x6 Mepilex Ag? Our daughter ususally has open back wounds and we like the silver properties and it is thick; provides padding.

Elle's family said...

Also Ehob mattress (air mattress with holes)

Anonymous said...

We are all thinking of Daylon, have you tried to lay him on to polymem to try to cover his back? My son has EB and this did work for him when he was sick? Best of luck we are thinking of you all

BRIAN AND BROOKE said...

Oh I am so sorry to hear about his back. Thinking and am keeping the prayers coming.