Day 35

Holden had a much better day yesterday, and seems to be on the right track again... His pancreas numbers were over a thousand two days ago, then dropped to 900's yesterday and 800's today. (They'd like to see them under 100, so we still have a way to go, but he's making progress!) He didn't have to have any rescue doses of morphine until late last night, so he's in considerably less pain. He's been up half the night and this morning, but as long as he's happy, I'm sure not going to complain about any missed sleep! They've started him on feeds again, but modified... Instead of trying full feeds of breastmilk, they're trying very limited amounts of Tolerex. It's basically a formula with no fat in it, since the fat in regular breastmilk and formula can irritate the pancreas. I don't know if it will work, but it's worth a try. Another thing we're trying is a change in medications... It's very rare, but one of his heart medications has a distant link to pancreatitis. We've switched him back to the previous med that does the same job, just in case that was the problem. Hopefully between those two changes, we'll get his pancreas back to normal and continue moving forward. This is pretty much the only thing keeping us in the ICU right now... He's still on Vapotherm, which is a step down from the vent, but we're hoping to get him weaned to the plain old oxygen canula soon. Once that change is made, his pancreatitis settles down and he's back to normal feeds, we'll be able to move out of the ICU to the 8th floor. From there we should be able to work towards getting him out of here, and we can wait for his new heart at home. We still have a long way to go here, but now I'm focusing my prayers on bringing him home for his first Christmas. :)

Dr. Pearse, his primary cardiologist.

His stoned half smile...

He can't sit up very well yet... His muscles are weak from not having used them in over a month. His solution is to hold his book up with his feet to read. :)

 And I've been trying to upload a video of him playing with a balloon, but it's not working. Surely it's not user error. ;-) It's been requested by a few people, so I'll keep trying!