March 23, 2024

Today went really well for David. After 38 days, he was finally reunited with his best friend Bear. I wasn’t sure if he would remember Bear or even want anything in his mouth at this point, but he immediately was happy to have Bear back. 

David was extubated this morning, and is currently on CPAP (for now). This is so much progress from last week when he was on SCUBA – the highest form of breathing support without a breathing tube. He’s currently breathing room air on it, although this first 24 hour period is critical with lots of monitoring. This afternoon after one of his respiratory treatments, his upper lobe on his left lung sounded a bit diminished. They increased his PEEP from 8 to 10, and it started to sound better. David may just need that additional support for now. If he needs any higher PEEP, they may have to switch him to BiPAP. However, so far his blood gas levels are looking great, as are his NIRS and his lactate numbers which are a sign of cardiac output. I’m so proud of David. He doesn’t have any voice when he cries, but he’s likely very hoarse and has a sore throat from being intubated for so long. 

This afternoon when he was awake, he seemed to be staring at the ceiling so we pulled out his mobile for him to look at. He really seemed to enjoy that. Hopefully he settles in and remembers what it’s like to be a baby again. We hope he continues to breath well over night, and then tomorrow can start handle moving around a bit more and maybe sit in his chair some more. He has a lot of lung secretions that get stuck in the back of his throat and he’s learning how to handle those again. I also want to remember to inquire about his left diaphragm as there was some concern that it may be a bit weak like his leg and arm. 

David hasn’t been peeing as much as he was, but he may finally have no more fluid to give. His legs, including his left leg, look normal! Tonight, his TPN will increase by 2ml per hour so he’ll get a little more nutrition. Two of his IV sedation meds were weaned off, so David is also being monitored for withdrawal and receiving some morphine and Tylenol as needed. 

Eli had skating lessons this morning and Anna gymnastics, but they wanted to come to the hospital after lunch. Once they arrived, it looks like they played with toys in the Endzone along with some sports and crafts. Then after dinner, they played outside. If you spot Adam around, try to ask him where the diaper bag is. Within the past year, he’s lost two of them! This morning he asked me where the one I use was, and couldn’t find it where I thought I left it last. Lo and behold, it was at the playground where it got left yesterday when he was playing with the kids outside. 

Finally, we’ve been in the ICU long enough to know that not every family leaves with a happy ending. It is heartbreaking for us. So tonight, I ask that you hold Elliana and her family in your prayers as they are nearing the end of their battle.