April 15, 2024

Once again, just slow changes for David today. His x-ray looked great this morning, so they lowered the PEEP of his CPAP to 7. David has always seemed to prefer 8, but his lungs are in a really good spot at this moment. There was talk about weaning some of his treatments, but the last x-ray they have of his lungs was a week ago and his lung was still collapsed on that one. So they will wait until his Friday x-ray to see if his lungs are still in a good spot before weaning those. The only other change of note was another wean on a withdrawal med – his ativan time. 

Initially, the plan for David this week was going to be a busy one. He still needs a full brain MRI to asses the brain injury of his cardiac arrests in more detail. It was thought to do it late this week and hope David has weaned from CPAP to high flow, but by the afternoon that was put on hold. They will need to sedate him for that MRI, and with the difficulties he is having with withdrawal, it would not be a good time for that sedation. 

Tomorrow, David will have his weekly echo. They are going to be trying to image his left upper pulmonary vein along with looking at his atrial septum. If they are unable to get a clear image of the left upper pulmonary vein, he will get a CT scan of it later this week. I have a hunch, he will be getting that CT scan regardless of the echo results. His atrial septum appears to have a little growth in it, as the flow is not as smooth through it as they would like to see, and then there’s the issue of the leaky tricuspid valve. 

Likely not this week, but maybe next week, the cardiologists / single ventricle teams will meet with all of that information and try to figure out the best plan forward for David. I think they would like the MRI results, if they are available, but the lack of them will not hold up these discussions. The cardiologist he sees in clinic is working the hospital this week, and she’s not sure what the decision will be for him – whether they try to repair the above issues, or is he a transplant candidate. However, his pulmonary vein stenosis may preclude him from being listed for transplant – there will have to be discussions with the transplant doctor. It is only one of the four pulmonary veins that shows this narrowing, but it’s still not zero. She mentioned there are likely to be very many strong opinions among all the cardiologists about which next steps will be the best for David. There are many unknowns, but there are many other kiddos who are more sick than him at this time, and David is finally in a good spot where they can take their time to try to determine his next steps. It’s good to have these discussions now before needing to make them when he’s in a downward spiral later. 

David had his dressing changed for his chest closure today. It’s looking better – it seems to be mostly scabbed over now – the part at the bottom. The rest of the scar has healed nicely. 

Well, this afternoon David had another bloody stool. It seems to happen every time he gets to full feeds and the higher fortification. I’m not sure if his body is rebelling to it or what, but once again, David is NPO (no more feeds) for the night at the very least. We’ll see what they decide in the morning. They did do an x-ray this afternoon and so far, it does not look like he has pneumatosis again. 

Otherwise, David’s highlights of the day included sitting in his chair, having a visit from speech (he did not like it today), having OT and music therapy, and getting cuddles from our favorite volunteer, mommy, and daddy. OT had him working on his abdominal muscles today, in preparation for rolling over. This afternoon there was a party for Fern in the lobby as she’s celebrating her 2 year anniversary. We are so grateful for everything she does – she visited us in the room while David was doing his OT and she had beautiful pink toe nails that a friend across the hall painted for her. Eli and Anna were able to attend her party (while I was getting my snuggles in). They each got their own little Fern puppies, and Eli said his is named Fern Tilly. We’re trying to figure out if Eli is coming down with a cold, so we they didn’t spend much time at the hospital or with David before going back home. 

Finally, one of our friends down the hall got the call today that his new heart had arrived. He has been waiting several months for that call, but it’s still bittersweet. That whole situation could use some prayers – prayers for the family of the donor as they are going through an unbearable loss, and then for the medical team, and finally for the child his family.