May 30, 2024

Well, neuro-surgery finally weighed in on the brain MRI from last week. They recommended a repeat MRI in 2-4 weeks. I’m not really sure which timeframe the team will decide they want to follow. 

David is requiring more oxygen support and as of this evening he’s back onto some high flow. He had an X-ray taken and his lungs look unchanged from Monday. By late tonight, it’s not even a little bit of high flow – it is quite a bit and almost maxed out. I don’t know if anyone has a good reason why he’s desaturating, but my hunch is due to too much fluid.  If he needs any more support they will start to test for viruses and he’ll be on isolation until those results come back. His diuretics were left alone today. It was discussed that David is not someone who you can make a change with and see the result a few hours later. He needs 48 hours for his body to show the change. So, they will leave him alone for now and try to get him settled out and needing less oxygen before trying to wean those again. 

David’s MCT oil was increased as well today. It was increased shortly after a new lipids bag had been hung, so David was allowed to continue on his lipids today, but they should be stopped as of this evening now. With that change to the oil, no other changes were made. That means they left his clonidine and valium alone for a little bit longer. 

We got David into his high chair today for some time out of bed. I remembered to bring him a sippy cup with handle to play with, and he did so well with that. He picked it up right away and started to move it all around – much improvement compared to the cup the hospital has on hand that does not have handles. After spending some time in his high chair, OT and music therapy arrived. He did a fairly good job down on the floor mat with them. This OT hadn’t seen him for a couple weeks when he was so grumpy, so she was  encouraged to see him have smiles today. 

He took a nap after that therapy session, and woke up in time to have a field trip to the End Zone for an event with the MN Vikings. Adam, David’s nurse, and David all traveled down there and saw CJ Ham, and even got to design a new shirt. I’m not exactly sure how this will work, but David will get a free shirt – whether it is his design, another child’s design, or they compile all the designs together, I’m not sure. David saw his heart transplant friend down at the event, and they two had a lot of fun together. 

Now the news that everyone is probably waiting for – we finally received some answers on David’s transplant decision this evening. We appreciate the team’s attention to getting as much data as possible to make the best possible decision for David. Today’s decision was actually no decision, as there was more information other folks would like gathered before they make a decision. Outside of that, the doctor said a lot of participants in the conversation sounded hopeful that a transplant would help him. The outstanding questions that need to be answered are as follows:

1. What is the state of his kidneys? His BUN and creatinine have come down nicely as he’s put on fluid. However, how are they really? He had an additional test done a few weeks back when those numbers were high, and that test was elevated. Now that those numbers have come down, they would like to repeat that test to see where his kidneys are at now. 
2. Regarding that subdural hemorrhage in his head. They would like to reach out to neuro-surgery to find out when they think he would be able to handle a large bolus of anticoagulation again. Would it be in several weeks? Months? 
3. Where is his neuro-development? They would like to reach out to the neonatologist and figure out where he is developmentally? At his age, they may only be able to gauge gross motor skills, which may mean some information from OT. He’s just been through a lot, and luckily at his age, he has neuroplasticity on his side and once he’s discharged he could possibly make large gains – but they would like more info on David before continuing.
4. David’s pulmonary arteries are very small. It’s a little odd they said since he’s saturating so well (well, he was). They may want to investigate this further. Since his cath got cut short, and it’s unknown when he could have another cath, so this may mean a CT scan. The surgeons are less concerned about this because they tend to use the pulmonary arteries from the donor, which could remedy this. David also has the narrowing on his one pulmonary vein. The junior surgeon seemed to think there was a technique they could do to address that if he got a transplant as well. 

So, they will try to get answers to those questions within the next week, and discuss again at their Thursday meeting next week. It was a long afternoon of waiting – we knew the meeting was at 3, but we didn’t get the results until 6:15. It must have been a lengthy meeting.

David wrapped up his evening with an evening bedtime story. I was told today they were starting the illustrated Harry Potter and the Scorcerer’s Stone. I read that to Eli when he was a baby, so now David can hear it from a child family life specialist. It sounded like he enjoyed it so far.