April 26, 2024

Today was very similar to yesterday in terms of David’s demeanor. Once again his fussiness ruled the day. He seemed very uncomfortable. No one is quite sure as to what is causing the discomfort – is it heart failure, is it digestive, does he have fractures? From what I and others think, it seems to stem from his NJ tube. X-Ray has shown it’s been kinked for quite a while, but it has always functioned just fine. There were a couple times in the last 2 weeks where it didn’t flush, but just rotating David’s position resolved the issue. Lately, even giving him his meds seems to really upset him – as if they are being administered too fast or too many. He usually starts screaming – even if he was sleeping – it seems to wake him up. Today, his feeding pump kept saying that there was a blockage. Toward the end of the day, one of the nurses had a thought that maybe a bowel is stuck near the tip of the tube, making it very uncomfortable for him. However, this is hard to diagnose because the bowel can move and then the issue resolves itself until it happens again. This afternoon they ordered an ultrasound to check it out, but ultrasound didn’t arrive until 7:30pm, and around 4 pm he finally showed a few smiles before finally falling into a deep sleep. 

David was awake quite a bit overnight with his fussiness. However, he was saturating quite high, so they took him off of high flow and back onto room air. He’s been breathing great since. He had no nasal cannula when I arrived today and everyone was so excited for him in that regard. 

Since he took that big step forward today with his breathing, there is less concern about his slow progress forward because he’s moving in the right direction and hasn’t stalled out. The larger team did meet today to discuss his next ICU steps. David will work on getting up to full feeds and then weaning off his milrinone (IV blood pressure medication). If David is still in the ICU in two weeks time, then they will consider bringing him in for a heart cath and possible a cardiac CT to get better images of what is going on with his heart. I have great confidence David will be able to meet his goals and be out of the ICU before that. A better question would be does he have his helmet before he leaves the ICU or not. 

Other changes for David today were to hold tight on his feeds and not increase them. There was a potential to go up this evening if his fussiness resolved itself today, but since he was fussy most of the day, they will not increase them tonight. They did go ahead and wean his methadone today since it had been a few days without any withdrawal med wean. Since his agitation does not seem withdrawal related, it was decided we could wean one of them. He still has PRNs (one time does) that he can have if he feels the effects. They also added back his clonidine. This was one of the meds he  had already weaned off of, and they will not wean it now until he’s off of milrinone. In addition to being a sedative, it can also treat high blood pressure, and David’s has been a little high lately (they have already increased his milrinone and added another med). 

At one point, David’s temp was taken and it came back as a low grade fever. So, blood and urine cultures were collected and sent. So far everything has come back normal for David, but if it is anything like the past ones, they will continue to monitor them for growth over the next few days. 

This afternoon OT and music therapy stopped by. David was still fussing and was thinking about sleep and they offered to come back later when he was happier. Knowing how the last two days had gone, he would not settle out. Rather than miss OT for two days in a row, I said it was better for him to do his therapy then. He did not enjoy music as much as he did the day prior – probably because he was doing stretches too. Surprisingly, he was very content for his tummy time portion on his boppy. OT gave him butt pats which he enjoys and music sang to him and he was calm. 

After therapy, I held him for a bit. Fern and her mom came and visited for a bit. David was still very grumpy. He seemed to calm for a moment when he saw his friend Fern, but then didn’t like me repositioning him so he could pet her. Fern was wearing her Taylor Swift bandana today and David was excited to tell her that Taylor is his Godmother. After they left he went back into his bed for a bath and he just zonked out and slept until they disturbed him for his cleaning. 

We’re still awaiting the ultrasound results this evening. Both David and his neighbor are very demanding of their shared nurse, so there was no wagon ride today. Hopefully tomorrow he’s less fussy and we can find time to fit one in. Otherwise, David did seem to enjoy snuggles today – he got some from me, Adam, and one of the nurses who is his biggest fan. She has another patient at the moment, but she comes in to check on David when she has an opportunity, and David seems to enjoy his snuggles with her.