May 21, 2024

Another good, stable day for David. It’s funny, the folks who haven’t seen David since last week keep wondering what changed because he’s so happy now. The only thing that I can think that has changed was his valium dosage. Whatever it is, since Saturday, he’s like a different baby – full of smiles, takes good morning and afternoon naps, and sleeping through the night. It’s so nice to see him enjoying life and doing typical baby things. 

This morning, Adam and I met with the social worker to answer some questions for the transplant evaluation process. Hopefully we didn’t mess up and raise any red flags. I’m not sure when all of the data will be available for the committee to make a decision, but with the holiday weekend coming up, it sounds like it will be sometime next week. Labs are still slowly trickling back in and I have no clue if any are still out standing. 

After David’s morning nap today, he got down to the floor mat and did some OT/playtime with his nurse. He seemed to enjoy that quite a bit, until he decided he had worked hard enough and deserved a break, so then he got to lounge on his boppy. Around this time, our hospital volunteer came in and played with David. David enjoyed watching the toys that were shown to him and listening to his stories. He was just starting to have a Taylor Swift dance party, when we got word that echo was on its way. Once they appeared David had to get back into bed, but he kept his Taylor Swift playlist going. In fact, this was likely the best echo he’s done that he was awake for – it must have been Taylor. His echo technician seemed to enjoy it as well – and Taylor herself stood at the head of his bed to offer her support. The read of the echo made is sound like the echo was stable from last week. 

After echo, David exhausted himself and settled in for his afternoon nap. While he was napping, he did win at Broadway Hearts bingo. When the prize cart came by later, David got himself his very own John Deere tractor! Eli is going to be so jealous and will want to play with it when he sees it. Eli and Anna stayed home today since they had swimming lessons. 

Once David awoke from his afternoon nap, I decided it was a good time to be done working and to just hang out with him. First, OT came by to do their work. She marveled at David’s smiles. She had stopped by in the morning to say she’d be by later, and the smiles were abundant. They did diminish while she made him work though. Eventually, he got to come to my lap for some snuggles and exercise.

A short time after OT left, speech arrived. She also marveled at David’s smiles and happiness. He did not show really any signs of oral aversion today and we talked a little bit about his next steps. Apparently, the team asked her to start discussing a potential G-tube for David. I know we’ve had his NJ tube for a while, but I didn’t know we were quite there yet since he hasn’t really had much opportunity to demonstrate his oral skills yet. Perhaps now that he’s starting to feel more normal, introducing oral foods might go better. Over the weekend, David’s nurse asked a couple of really good questions – has OT discussed a high chair, and has speech discussed purees? Well, I forgot to ask the OT question when OT was around, but I remembered the puree question for speech. She loved the idea – a combined OT / speech session and she wanted to bring it back to the team. Well, it sounds like they liked the idea too, so David will start sitting in a high chair and getting puree play time – another chance to be doing the things a typical 6 month old baby would be doing. 

The team also started to review David’s vaccinations. Usually vaccines are not on their radar while in the ICU, but got pushed to the forefront with the transplant evaluation process. It would be beneficial for David to be up to date on his vaccines prior to getting a transplant, so tonight David received his 4 month vaccines. This will give him time to have any reaction that may occur before his tests on Friday. Friday morning, David will start with a meckel scan for GI. This will be a scan that will check for another potential cause of bleeding. So far David has not had any bloody stools since late last week. After his meckel scan is complete, David will have his quick brain MRI. 

After speech left, we did David’s favorite activity – wagon ride! Since David was not paired at this time, we enjoyed a nice long wagon ride. First we went outside and did one lap and David got a leaf to mark the occasion. As the lightning was flashing, and his nurse was pushing the metal IV pole, we decided we probably should not do anymore laps with that lightening rod. So, we then hung out under the awning for 5-10 minutes and watched the storm blow in. The temp dropped, the wind picked up, and soon it was pouring rain. This was David’s first experience with rain and he seemed to like it. He’s a very curious, but serious boy outside – there is just so much to take in! After watching the rain for a bit, we went to the End Zone and did a lap before heading back upstairs where we completed I think 7 laps on the unit. David is definitely feeling better because he doesn’t mind if we stop for a quick chat anymore, and he gives so many smiles. He eventually picked up his vaccines from the lap drop station and then got word that he was receiving a neighbor and would be paired. So he ended the night going back into bed (he screamed yet again), and promptly fell asleep. What another great evening! I love it when I can get a little exercise in while he’s enjoying his activity.