Day 16 Post-Transplant

Jaisal's liver = awesome.

Jaisal's breathing = improved. Today our goal was to keep Jaisal off the mask unless he was sleeping or showing signs of serious respiratory distress. He managed pretty well and was able to enjoy most of the day on oxygen support from high flow oxygen. We noticed that Jaisal's vitals looked worse and he was breathing with more difficulty after he exerted himself. For example, we were working on some weight bearing on his legs during physical therapy today. After about 5-7 minutes of work, we had to take a break to let his heart and respiratory rate settle. The good news is that he was able to recover and we had another round of therapy/play.  All of this makes me think that if we can keep Jaisal healthy, his breathing issues will improve as his endurance improves.

With that in mind, Kirk and I have put into motion the conversation to work on our discharge. I think tomorrow during rounds we will set up a plan of how to wean Jaisal from his secondary respiratory support (the high flow). If Jaisal can tolerate room air during his wakeful periods, we could handle putting him on bipap at home if he still wasn't strong enough to recover from a whole day's exertion.

I think the team is listening to us a bit more about Jaisal's breathing after a few small communication debacles over the holidays when an alternate team was caring for Jaisal. One of the main points they listen to us about is the amount of x-rays we are willing to let Jaisal have. The PICU is all about daily x-rays for kids, and considering that we've seen very little change in the few x-rays I have let Jaisal have in the last week, I am against exposing Jaisal to more radiation unless absolutely necessary. Each time the team proposes any sort of radiation based imaging, we ask if the results of what they see will change their course of treatment. If it will not, we won't let them x-ray Jaisal, unless a physical exam shows worsening symptoms in his lungs. Some of the doctors seem to struggle with this judicious approach, but considering we've pretty effectively been able to hear problems in his lungs any time it shows up on an x-ray, I feel pretty comfortable with our preferences.

Jaisal's energy = out of control. Little man is all about play time again and needs constant entertainment. If he weren't tethered to his crib or a small play mat on the ground by his tubes and such, he would be getting into everything. Somehow his stranger anxiety seems to have disappeared and he was a massive flirt with everyone. He smiled at people, waved bye bye, blew kisses. This sort of interaction with strangers is completely unheard of for Jaisal. I have no idea where this people friendly kid came from, but I like it. Of course, he's cute enough to win people's hearts even when he was being a grump. The fellow who'd taken care of him his first week in the PICU came to check on him, even though he's no longer her patient and one of our favorite night nurses from the 6th floor came down to visit. It's fun to know the nurses up there miss us. We miss "our" floor as well, but it's looking more and more like we'll be discharged from the PICU, whenever that time comes.

Jaisal's appetite = ravenous. This kid is getting NG fed 36 ounces of 30 calorie formula (a formulation that is about 50% more calorie dense than regular formula) over 24 hours. This is roughly 8 ounces more a day than he was eating pre-transplant, and yet it's no where near enough to satiate Jaisal. In addition to the formula, Jaisal grazes on solid foods all day if allowed and usually will drink another 5-7 ounces of 30 calorie formula. I know this is a side effect of the steroids, but it is beyond fun to watch Jaisal devour food.

Jaisal's donor = improving. Scott went back to work today for the first time. He made it nearly a full day before getting exhausted. He's still experiencing some pain and fatigue, but the biggest problem is nausea. The nausea is an expected side effect of the surgery, but I am hoping it comes to an end soon. Hopefully once Scott is eating normally again, I can send Kirk to Massachusetts to spend a weekend cooking some seriously yummy meals for Scott, Chris, Acadia, and Rylan.