May 29, 2024

In some ways, being in the hospital is a time warp. Some days you wonder where the last 3 hours went, and other days you wonder if there is an end in sight. Other times, we are reminded that life continues on outside the hospital. We get so caught up with what’s happening within our 4 walls, that it’s easy to forget time is not stopped outside those walls. Today was such a day. A few weeks ago, we were informed that Adam’s Aunt Sue was diagnosed with liver cancer. We were devastated, but she’s been healthy and a fighter, we just didn’t realize how little time we had left with her. This afternoon, Adam was informed that her time here on earth is running short. We are heartbroken and would love for prayers of comfort and strength for her and the Tilly family as they navigate these days ahead. 

So, tonight Adam picked up the kids and brought them to the hospital, and then was able to spend a short time with his aunt and her family, while I tried to wrangle the chaos within David’s room. Thankfully, David mostly slept during this time, but of course Eli and Anna had their typical sibling squabbles. David did awake for a moment with some gagginess, and thankfully his nurse was right there checking on him and getting him comfortable again. It had been a while since we’ve had her as our nurse, but we always love it when we do since she takes such good care of David. I didn’t really want to leave David merely because he was sleeping and I had the other two, so we stayed and read lots of books – well Anna and I did, Eli eventually left us to play with David’s train he won at trivia yesterday. Despite some struggles, I think our time there went as well as it could have. David slept until about 5 minutes before Adam arrived back, and then they watched the Minnesota WPHL win the championship! It was a good night for David. 

Otherwise, David slept a lot today, but between periods of sleep, was awake for some activities and therapies as well. This morning he had speech therapy – which meant Messy Play! Today he tried peaches. He was rather apprehensive at first, but soon changed his mind. Lifting his hands to his face, or even a spoon to his mouth, takes a lot of effort for him, so he doesn’t always like these activities. However, after whining and getting his first taste, he changed his mind and decided he liked it. They dump some out so that he can put his hands in it and feel the textures and hopefully move it to his mouth. For the most part, he just gets it all over his face since his hands are put into the food and eventually he tries to grab something on his face. This activity went so well today, that we can now do unsupervised messy play with him every day. I’m not sure how much his nurses will appreciate the daily mess, but it’s good for David’s development. He may never drink from a bottle, but maybe he’ll go straight to solid foods. 

This afternoon, he had a combined PT & OT session, which went pretty well for them. He did tummy time, trunk rotations, vision tracking, and probably other things I’m forgetting. When therapy ended, we were informed David needed to put his helmet back on in order for the orthotics guy to see the rubbing that is occurring. David fell asleep waiting for the orthotics guy, who was supposed to arrive an hour after the helmet went back on. 

Once the orthotics guy arrived, he examined David’s head and helmet to see exactly what was occurring. He did not like how David’s skin looked under the helmet, so he took the helmet to make some adjustments. On the side that was causing the most issues with his head, he made an adjustment and then also added a teflon-like pad, and the other side he just made an adjustment. Hopefully David is happier with his helmet now and it won’t be too uncomfortable. It was also determined that David will give his skin a break again until tomorrow morning, so David is enjoying another helmet free night. Tomorrow, he’ll need to start wearing his helmet full time again. 

Medically – they ended up not restarting the blood pressure medication yesterday since apparently after saying they were going to, David lowered his blood pressures. That’s very typical of David – he seems to think everything is a challenge that needs to be disproven. For some reason, they weaned his diuretics again. It’s kind of surprising since David seems to have a lot of fluid. Well, surprise, surprise, David was even more fluid up tonight, so they were increased the diuretics back to what they were yesterday morning. At one point this afternoon, David needed some oxygen to help him, which could be his lungs saying “too much fluid” as well. There was also talk of weaning his clonidine. Luckily, we are just going to let that ride for now – David does best with small changes, and only one thing at a time. 

We got a call from the Infectious Disease doctor today as he was writing up his transplant recommendation. David apparently shows some antibodies (or something) in his blood that were likely passed from me to him via the placenta (such as chicken pox, and Ebstein Barr). However, it should go away in 12-18 months. It just makes it look like he’s had exposure to some viruses he likely has not. They will continue to monitor him, and if he’s approved for a transplant will follow those tests closely to see if he ever has a live virus of them. 

Well, tomorrow is the big day when the transplant team will meet to discuss whether David is a good candidate for transplant. I’m a bit worried that he will not be a candidate, but we’ll find out right away after they meet what the decision is. The meeting is at 3, so we’ll have some answers to questions after that. If he is a candidate, it sounds like the process to list them happens very quickly.