April 1, 2024

David is 5 months old today. Time has certainly flown by. Highlights of today included his weekly wound vac change. They say it’s healing up nicely and his surgeon stopped by this afternoon and said next week they will likely take the wound vac off and allow it to finish healing without it. David’s kidney numbers are looking better, so he is happy with David’s slow progress at this point because he is progressing and not taking step backs at the moment. He also mentioned at this point, his biggest things he needs to work on are weaning his vent support and his feeds. 

During the wound vac change, they also removed the atrium wires for David’s pacer. He hasn’t needed to be paced in over a week now, so it was a good time to take them out. This is one less thing for him to grip with his hands and pull on – for whatever reason, he was drawn to those wires and really wanted to cause some trouble by pulling on them. He does still drop his heart rate sometimes (for a reason), but luckily it’s been very brief and he recovers fairly quickly. After all this, vascular came by and gave his PICC line a dressing change. They said everything looks good with that as well. 

As for his x-ray, I believe it showed slight improvement in his lungs today. He’s going to be doing 4 hours of SCUBA followed by 4 hours of RAM during the day and will continue this until midnight tonight. SCUBA is definitely bothering him and he’s much happier on RAM. However, he needs to work on keeping his lobe popped open. His vent settings are a little higher on the RAM vs SCUBA to try to compensate for the additional PEEP that is lost with his mouth wide open. This afternoon, he was getting his nebulizer treatments and pats when Adam and the kids arrived for dinner. Eli has been wanting to see a video of David getting his nebs, but it has been hard to acquire, so I asked Eli to come to David’s room and see him. It took a while, but David eventually exhaled with his mouth open (actually, I think it was a cough), and Eli saw the white steam of the nebs come out through David’s mouth. We’ve been saying that David looks like a dragon when he does this, so Eli thought it was pretty cool to see Dragon David. Later he said he wished he saw David breathing fire! Well, I can say I am glad that he does not breath fire. 

Eli and Anna only stayed at the hospital through dinner and then went home. Eli wanted to go home and Anna wanted to go to the Endzone, so our compromise is that we went home today, but tomorrow they will play at the Endzone for a bit.

Otherwise, David and I got about an hour of cuddles in today. He was also visited by OT and Speech. Speech is encouraged to hear his voice – everyday it gets a little louder, but his cry is so darn cute (at the moment anyway). Once it gets louder and more ear splitting, it probably won’t be so cute, but right now it’s so pathetic it is adorable. He’s definitely not ready to start sucking yet, and part of that is his high pressure vent settings. They won’t even try oral eating skills until he’s on high flow and it’s a certain number based on his weight. David also gets slightly more food now – he’s up to 2 ml an hour (perhaps 3ml by this evening). Slow and steady is the name of the game for David. Luckily no one informed him that it was April Fools’ Day because I’m fairly confident he would have had a couple tricks up his sleeve to pull out for us.