May 11th Update

So yesterday obviously sucked with the Complete Tracheal Rings diagnosis. But we're following Kilians lead and continuing on. I just spoke with his nurse regarding his daily update and he's having another great day.

• He was on the regular respirator after his bronc and was just not having it, so they switched him back to the NAVA and he's now one happy camper. 

• 21% oxygen

• Keeping the PICC line in until its decided what the plans are going forward with his airway/surgery (Slide Tracheoplasty)

• They haven't been able to get in touch with the surgeon for the Slide Tracheoplasty, he's had back to back surgeries. But they believe his old CT scan along with the bronc images will be enough to go off of (they were thinking he'd need/want another CT). The nurse said she's hoping Friday we can sit down with him but it all depends so not setting that in stone.

• He's back up to his full feedings..they had to stop for his bronc then work him back up to the full amount, and the little chow hound is there.

• His pulmonary hypertension - he's been off the remodulin for a couple of days now and doing great. Theres still evidence of the PH in his echo (moderate dialated right ventricle..which has been the case the whole time), but the overall function looks better and better so the plan is to keep him off the remodulin and just keep monitoring him. He may have to go back on it if he has the surgery for the CTR, and that surgery will also help determine if the PH is long term.. but we'll cross that bridge when we get there. They also are going to wean him off the hydrocortisone. 

• He was on a very small dose of another sedative, and they've weaned him off of that so he's almost 'normal' in the sence of alertness/movement. Hence his mittens, he's tugging at lines and pulling off his hand monitors. "He's lost his privileges" she says lol!

• The crisis panel came back! This is the genetic testing. And suprise surpise, it was all negative. This is a mute point..it was a shot in the dark that it would actually give us any useful information for him and his care, but it does tell us that from a genetic standpoint, there doesn't seem to be anything that we would pass on to another baby. So that's obviously reassuring.

• He had a little fever last week (we didn't say anything about it, were waiting to see what they found), and they started him on antibiotics right away to be proactive. Those cultures came back all negative. He's been getting a little warm in his isolette (hence the talk about moving him to a crib - kind of waiting on that now with the CTR diagnosis) so they think it was probably just that he was getting too hot. They've got all those settings adjusted now and he's nice and comfy.

• He's officially in pajamas!! And almost too long for preemie size. So if anyone wants to do something that feels a little normal and get the surgery off their mind (I'm chomping at the bit to get to the store), he could use some jammies. Preemie or newborn size, and they need to be snaps for his PICC line, no zips. You absolutely do not have to get him any but I know I could use a distraction, so thought I'd offer the info.

• That's all for today 😊