Day +41

Warming Daylon up after his dressing change

The last 24 hours have been big ones for Daylon. For those of you parents out there, you know how you brag about how your kid is ten times smarter than any of their peers, or how your son is so fast and athletic that that the scouts will be following him around by his sophomores year of school...and you're not just saying that cause your his parent...everyone says so. OH! and remember how when your daughter was four months old and you passed the 'Marry Poppins' DVD at Target and she said,"Supercalifragilisticexpialidocious"?... Ha, ha! Parents brag about the funniest things! I have one that might top the crazy list: Last night, (drum roll please!) Daylon peed his diaper!!! Woo-hoo! "My son wet himself and it only took 2 weeks." :) Seriously though, this is bid news that his kidneys are starting to work. It was 100g., so decent size. His creatinine was also at an all time low of .8! Yay! Between pee and dialysis, he's is negative in fluids for the first time since he's been in the PICU!!! It's so great when your kids vital organs are working. :)
This morning at 10 minutes to 5, I dropped Brian off at the MSP airport. He's flying home on a business trip (that sounds funny). He'll be gone until Saturday night. It's so pathetic, but I already miss him. I'm kind of jealous too; back to the land of no humidity and ants under a half inch in length. ....Honestly, Minnesota is great! It's super green and beautiful. This humidity just may kill me though. My 1/3 mile walk from the RMH to the hospital or vice versa (which I do 6ish times a day) has started to feel like 2 miles ea. way. Anyway, enough of me griping. Back to the story!
Look at all that wire! MRI's are messy!

So I dropped off Brian and then headed over to the hospital for early morning rounds where they took him off two antibiotics (YAY!), and then an MRI check on hemorrhage and necrosis (dead tissue/brain damage) status. The MRI showed that his body is starting to absorb the bleed! I'm so happy that things have improved for him. The necrosis is still the same, that won't get any smaller because what's done is done. On the bright side, it didn't get any worse either. I still say Daylon will shock us all. Because Daylon's MRI showed signs of improvement, the doctors are ready to start heading towards extabation. There will be several days of little trial runs to see how well he can breathe without the vent. They will also start to wean his sedation to help him to breath easier. The tricky part is that less sedation means wiggling and fighting the tubes which in turn means, open sores and a chance for infection, not to mention the pain associated. They'll need to walk that line between wiggling and unable to breathe from the meds. Daylon has two modes: sleeping and spaz. He'll also go through with drawls from his meds. It'll be a necessary hardship for him. I've starting asking questions because I know that if we could hold and talk to him, he'll do better. This kid was held most of his life before the PICU. He loves to be held.


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I wrote that last night but never posted it because I got caught up in an INSANE dressing change. Dr. Tolar told us that his skin's condition would fluxuate in a rolling hill pattern and the further we got away from transplant, the smaller the hills and the bigger gaps in between them. It get worse initially, then great around 3 weeks, and worse a few weeks after that, etc. Well, we've hit a hill! When I unwrapped him last night there was a HUGE blister that took up his entire left heel, on in his left palm, and two on his right. Like the size that I need to use a seringe so the nurses can count it towards his fluid out put. I think part of the problem is that he's been a wild man, flailing all over and also, since he's down on his weight I think the larger tubifast (picture an open-ended sock that holds the bandages in place) that I switched to when he was bigger a few weeks back, doesn't fit right anymore. When it doesn't fit, it doesn't hold the dressings in place, then they slide down creating friction. I went back down to a smaller size so hopefully I'll have better news on Friday.
His bilirubin was checked today and it's at .7! He's totally within normal range! Things are looking great! I'm so excited to post pictures on Monday night of us cuddling our tubeless babe! Thank you all for checking in on Daylon and caring so much for him! Thanks for the prayers too! We love 'em!