Day +178 - update from the PICU

 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