June 1, 2024

Today David turned 7 months! He eventually weaned down to low flow, but not until this afternoon. Really the only change for him today was with his diet – they added in some protein (amino acids I believe). This afternoon David was very gaggy and spitting up a lot. It’s hard to say if they are related, but nothing else has changed. 

On Wednesday and Thursday, two of his nurses had noticed the skin near his PICC was red and irritated. The PICC was held in place by sutures and vascular was paged on Thursday to check it out. They wanted to wait until after morning rounds on Friday where the whole team could discuss why it was sutured – was it for a reason or was it the IR provider preference. Well, we forgot to inquire so when they came back to ask what the outcome was we were embarrassed to say we forgot and I made note of it on our board. Vascular said it no longer looked so red so it wasn’t as urgent anymore. I remembered to bring it up today, and there was no reason for it to be sutured vs a griplock. The team then decided to get the sutures removed and replaced with the griplock. Somehow, David slept through that whole dressing change. Everyone was happy that it was no longer sutured as his skin was getting sores. I also learned that the sutures can get even tighter and cause the redness as his fluid levels increase, and could have even pulled out, so I am very happy that those were removed. 

After a morning bath, David spent some time in his high chair. We played with some toys, and eventually transitioned over to reading chapter 2 of Harry Potter and the Sorcerers Stone (illustrated edition). I almost forgot to grab that book today, and had to turn around and run back home to grab it since David needed to get caught up for tonight. Well, we got a couple pages in before David fell asleep. 

While David was sleeping, the ID (infectious diseases) doctor stopped by his room and we had a quick chat about the different tests results David has had and what he thinks about transplant. From him point of view, David can go ahead with a transplant without a problem. Since David had so much blood product when he was born, his newborn screen results are not exactly trustworthy, so he had a repeat test done – specifically looking for SCID. In the end, he does not believe David has SCID. David’s results were not perfect, and not in range for everything, but the numbers were not so far away from normal that it would be a cause for concern. David has not had any major infections (that were not caused by something that was done to him), so he would like to see David listed for transplant. The doctor wanted to go over the results with me and make sure all my questions were answered before signing his note and discussing with the team. We talked about what information the team is still seeking before making a decision, and he was happy to hear that infectious disease concerns were not one of them. 

David awoke toward the end of this conversation. He took this nap in his high chair, and decided it was really hard work and he wanted to get out of it. So he pretended he was falling back to sleep,  so I put him back into bed. Next thing I know, he’s wide awake and not tired at all, so we finished reading our chapter from Harry Potter. After this he then took a good long nap. 

While I was hanging with David, Adam took the older kids out for their “adventure” today. Our adventures, started off as “advent-ures” during Advent when we’d have an activity planned for every day – ranging from an activity at home, to doing things for others like picking out toys for a toy drive. However, once advent ended, Eli didn’t realize our “advent-ures” would stop, so he kept asking what our adventure was for the day, and sometimes creating his own. Once we got David’s in-utero diagnosis, we didn’t know how much time we’d have for fun activities after he was born, so we made it a point to have an “adventure” every weekend before he was born. So, today was another day with an “adventure” for them. They started off at Home Depot building a wooden grill, and then ending up at a Touch-A-Truck event. That kept them very busy. By the time they arrived at the hospital, David was napping, so I got to spend an hour with them in the End Zone before it closed. We played an odd sport game with baseball bats and a ball and a net before transitioning to hot wheels and paw patrol. 

As the End Zone closed, David had awoken. So we went back upstairs to his room where we had some dinner and tried to play with David. However, he was very gaggy this evening, which put a damper on me being ready to go home. At this time, he was also put back onto low flow. He’s on low flow on the blender (not straight oxygen), and I asked his nurse about that since it confused me the other day. In her opinion, he should always be on the blender since he’s a mixer (his blood is purple as he only has one ventricle so his blood is neither red nor blue in his heart but a combination). This made me feel better, and gave me more confidence to try to make sure David is on the blender. 

We stayed around for a while waiting for David to settle. I didn’t feel comfortable leaving with him spitting up so much, so we read some books in the meantime. Then later this evening, David woke up just in time for the nightly novel, where they read chapter 3. I was very happy I got David caught up to the right spot in the book.