February 8, 2024

Well, today David lost weight again, so his team decided he should spend another day here. The dietician increased his feed volume so we’ll see where his weight is tomorrow. I think he’s come down with something because he has lots of thick boogies and a new rough cough, and when he cries is sounds like it did when he was extubated. My guess is his body is using a lot of calories to try to fight off that bug. Anyway, they also thought it may do David good to spend another night here since they will meet in conference tomorrow to discuss what his next steps may be.

David had several visitors today, which included OT, speech, and his home medical supply company. It’s always fun seeing familiar faces from his initial stay – they all remember him. It’s also funny – it doesn’t matter who it is, the first words out of everyone’s mouths when they see David is how long his lashes are. For speech, it was the same lady who tried to give him is first bottle ever, but he was too busy “playing opossum” and pretending to sleep to eat it. We remarked how the times have changed – he used to pretend to be too sleepy to eat and now he’ll only eat if he is mostly asleep. There is one night nurse that he always finishes his whole bottle for – nurse Abby. She wasn’t his nurse last night, but she did stop by to try a feed since he wouldn’t eat for his nurse, and of course he finished it for her. I think we’re going to have to hire Abby to come live with us to feed him all the time! Adam did say he was able to successfully give David his whole bottle tonight – so maybe we’re making some progress. I was only able to get a few milliliters into him today. The first time with speech – it was a two person effort – I held David and his bottle, and they gave him butt pats. He seemed to enjoy that. The other time we tried turning on the tv to give him something to look at (actually it was on because we just finished playing Bingo). It seemed to distract him in the sense that he didn’t scream with the bottle, but he still mostly kept pushing away. 

OT came to do some massages and exercises this morning. David wasn’t really sure that he wanted to do anything and fought it and eventually fell asleep on her. She’ll be by again tomorrow to give it another go. While OT was starting their work, the home medical supply company arrived and gave Adam and I everything we need for using David’s feeding tube at home and detailed how to use the equipment. There are many things to remember, so hopefully we remember everything. 

This afternoon, David was able to play bingo – the theme was the Super Bowl (Taylor’s Version). Well, I may have added the Taylor’s Version part. To prepare for the game, one host was dressed up in lots of Taylor Swift apparel and the other host said the Super Bowl is not all about Taylor so the first host she left and returned with a Chiefs shirt that was still mostly about Taylor (the Karma quote about the guy on the Chiefs). It made us laugh (well, it made me laugh and Adam may have rolled his eyes). Since David was baptized when he was 1 day old, he doesn’t have God Parents, so whenever we see Taylor Swift I always half jokingly tell him that she is his God Mother (I think Eli thinks she really is David’s God Mother at this point). 

Otherwise, we tried something again this evening that we tried on Tuesday, in which Adam runs and picks up the kids after daycare (the time he normally would pick them up), and brings them back to the hospital where we have some time together as a whole family. We eat dinner, then have a little time for some sort of activity. Tuesday they played in the endzone (played a little hockey and then lots of painting), and tonight since the endzone was closed we found some toys from the toy closet. Afterwards, they get ready for bed in David’s room and we end by reading some bedtime stories together before I take them home for the night. When David’s home, we read stories to all 3 of them, so it’s nice to do that when we can. Over the weekend, when they were there all day, we didn’t bring their pajamas or toothbrushes and they would fall asleep on the way home and I’d have to kind of wake them to get them ready for bed. So, of course I figured if we brushed their teeth and got on PJs at the hospital, they would fall asleep on the way home and I could put them to bed with less disturbance. Tuesday Eli stayed awake the whole drive home and today Anna did and Eli woke up once we got back. It didn’t exactly save me time with them staying awake. Oh well. 

We’re hopeful tomorrow David will finally be able to go home and that we’ll feel comfortable with him coming home. Hopefully he starts to gain weight, and that we’ll have an idea on his next steps or at least an idea of the different paths and the criteria he needs to hit for each. It will be nice to have some direction, but also a little scary since the direction will include some sort of open heart surgery. I know whatever they decide will be the best for David.