May 7, 2024

Well, David overheard the plans yesterday, and like we thought, he has other plans. This afternoon while I was discussing with a provider and he was in his wagon, one of the nurses nearby said she saw him moving his head back and forth as we were talking, as if he was intently listening in. In his head he was probably laughing thinking “these crazy ladies are trying to figure out my plan, if only they’d ask me!” Anyway, David will not be moving upstairs until sometime next week at the earliest, but I’ll get to that in a bit.

David’s day started with his weekly echo. For the second week in a row, he slept through it. Well, he was awake at first, and his nurse, Fern, and Fern’s mom from child family life came to comfort and distract him. Yet, somehow, he fell asleep.  Echo was done and gone before I knew it. 

Today, like many days since the end of April (April 25th if I recall), David was fussy. His nurse was able to push back on starting his clonidine wean yesterday saying that lately he has received more PRNs of his medications than he was a week or so ago. He used to need about 0-1 PRNs a day, and now we’re up to 4 or more. Something is just not right. However, she noticed that the wean wasn’t delayed much and was set to start this afternoon. 

I knew we had some thoughts on whether David has intussusception around his NJ tube. We’ve been wondering that since April 26th. His ultrasound that day said he did not have it; however, it’s a time sensitive ultrasound and if not caught at the right moment, it can momentarily resolve itself. I didn’t believe it then, so I brought it up again today by asking when we could start feeds through an NG so we could eventually take that NJ out. Turns out, not quite yet. 

After David’s morning nap, he woke up, and we tried the dance party method again to get him up and distracted and moving. It worked for a bit, but eventually he wants to be done because exercise is hard work. Around this time is when OT showed up. Whoops! No time to rest for him. So, he went down to the play mat with OT and Music Therapy. He whined his way through it, but he did tummy time on his boppy and then 4 minutes of flat tummy time. He did so much better than anyone thought. 

Once he was done with that, it was time for him to take a nap. We got him all tucked in, and then echo showed up again. They needed some more pictures. I’m not sure if they needed some better pictures or if some were just missed. David was a little fussier this time around, but still managed to make it through without a major meltdown. Shortly after echo left, our new friends from PACCT (Pediatric Advanced and Complex Care Team) showed up to meet David. They had a lot of questions about how we calm him and what works and what doesn’t work. Since he was sleeping, they were unable to do a full assessment on him since they didn’t want to disturb him after finding out how hard it is to calm him sometimes. They sound like they will be the perfect addition to David’s care team – they like to do things slow and one thing at a time to not introduce to many variables. So, their first suggestion today was to not start the clonidine wean until his fussiness is resolved. 

David took a good nap, and then woke up and had a massive diaper. There was one big problem though, this diaper was filled with blood – much more than the flecks we’ve been seeing. David’s feeds were immediately stopped. Is he having trouble with the 26 kcal since that was increased yesterday evening? Does he have intussusception? Pneumatosis? First x-ray was called, and that looked good which ruled out pneumatosis. Next, ultrasound showed up. David screamed through the entire ultrasound, so we were hoping to have it show intussusception. Fern and her mom even came back to provide some comfort to David during this procedure. Eventually, he got his ativan and morphine PRNs to calm him since the tech was having trouble following his NJ tube. When all was said and done, the results said no intussusception. His nurse and I didn’t want to believe that. There’s no way with how he screamed through it and hated his belly being pressed on, and the amount of blood that is coming out in his stool. During this time (I don’t recall whether it was before or after x-ray), the provider from PACCT came back to see David awake and do her assessment. It was good she could see him fussy and the aggressive bouncing (vestibular input), he likes to calm. 

So, after he was all covered in gel from ultrasound, we decided it was time for his soap and water bath. Usually, David hates these sponge baths, but today he seemed to at least tolerate it – probably something to do with the drugs in his system. After he was all clean and dressed, we were surprised he hadn’t fallen asleep since his ativan usually knocks him out. Since he was awake – it was time for a wagon ride around the unit. We took him off his oxygen for his bath and he was going to continue to be off of it for his wagon ride. Since David was also going to be NPO, we didn’t have to bring around his pole with his feeds, making this a rather easy wagon ride. 

David always loves his wagon rides. He has quite a following of fans. Even those down in the PICU know him and wave and say hi to him as he makes his rounds. The only thing he doesn’t like too much, is if we stop to chat for too long – he likes to go! After the first lap, the doctor on staff this week stopped by to talk about the echo and his bloody stools. So, David and his nurse continued to do laps while I chatted with the doctor. 

Basically, on the echo this week, they noticed that he has a collateral that formed connecting I believe the aorta to the pulmonary artery. The thought is that his lungs are so starved for blood, that it formed this collateral to get more, but this is stealing blood that would otherwise go to his gut, which in turn is causing the bloody stools. I think this is what they said. There are a couple options to confirm this, a CT scan with contrast, or a cardiac cath. The cath would also be able to fix it by putting a coil in that collateral to block it off. As of this moment, David has a cath scheduled for next Monday to address this issue. I’m really hopeful that this resolves his bloody stools and his fussiness that has seemed to stem from gut discomfort. It was also brought up that David needs a full brain MRI, so it would be nice to coordinate and get both done. We’ll see if it is possible.

After getting this information, I was able to join David for his wagon ride some more. In total, he did 5 laps around the unit. Toward the very end of the last lap, he started to fall asleep. So we got him back into bed, and let him rest. When he awoke, I got some cuddle time with him. It was some of the. best cuddles I’ve had with him recently. Most of the time, he’s crying about some sort of thing that’s bothering him, and today he was happy to be held. We read some books, sang some songs, and then he fell asleep and we just got cuddles in. It was so peaceful. I think being NPO does him well. He never seems to be upset about being hungry – as if being hungry is a lot less painful than whatever his gut is feeling otherwise. I hope David gets some good rest tonight and hopefully whatever is bothering him is resolved while he’s NPO so next week they can address that collateral in the cath lab.