Very minimal changes for David today. He was on high-flow oxygen all day before being switched back to RAM CPAP tonight. He was on CPAP last night as well. He did really well on his high-flow today, with his only frustration being unable to dislodge the cannula.
David’s chest/abdominal x-ray looked great today. His right upper lobe of his lung has remained open, and there were no signs of pneumatosis. One of his respiratory nebulizers were stopped today since his lobe is still open. When I arrived this morning, David was throwing a party in his room with his friends from general surgery. They agree that he looked good, and they could not find any cause for his bleeding. It very well could be from his aspirin and lovenox anticoagulation. Perhaps his NJ feeding tube aggravated his intestine which caused the little bleeding. No one knows, and we’ll take it slowly with David. He remained off his feeds today and perhaps tomorrow they’ll slowly reintroduce feeds again.
His fluid level was down quite a bit from yesterday (likely because his maintenance fluids are not as much volume as his feeds were). Well, his kidneys noticed this as his BUN and creatinine were up (BUN up considerably). They will increase his TPN volume tonight so hopefully that will help with that issue.
Otherwise, it was a quiet day for David. He hardly napped at all though – mostly awake and content or wanting attention. The couple naps he took were rather short – although he always seemed interrupted shortly after falling asleep for a respiratory treatment, a vital check, or a sibling arrival. In any case, hopefully he sleeps well tonight. He did get some cuddle time in with the volunteer who also read him some stories.
This afternoon David played Fern Bingo – the board was a bunch of photos of Fern. It was too cute, and definitely fun. That’s about everything that happened today. Speech stopped by and we spoke a little bit of some expectations for David – for example, he no longer has a suck reflex since that goes away around 3 months. Therefore, it’s not uncommon for him to not want to take a bottle anymore, but he may take purees when he’s ready, so he’ll likely go home with a tube, and he’ll continue to have speech outpatient.
We also spoke about what David’s ICU hospital stay may look like and what they would like to accomplish before he goes to the floor. First, they are still weaning his respiratory support. He must be on high-flow and need no other support to go upstairs. This we knew. They would also like to switch his milrinone (a blood pressure IV medication) to captopril (a blood pressure oral medication) before he heads upstairs. This has been put off several times at this point, and it sounds like they expect him to maybe have some issues coming off of it which they want to monitor. He’s been on captorpril before, but that was before surgery. They also don’t want to attempt this switch until David is on less respiratory support so that they know anything that happens is a result of the medication switch and nothing else. However, they also cannot try the oral med until David is getting food again.
After dinner, Eli and Anna went to the endzone to do some painting, and I hung out with the very awake and refusing to sleep David.
👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻👏🏻 A lot of positivity going on with David💙💙💙💙💙 Thank you God for ALL of your blessings upon David🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
I love the concentration I see on his face as he poses for the camera with his ?giraffe?. More positive info which makes me happy. Keep up the good fight warrior David. Love and blessings to all.
Yeah it is a giraffe. It is a toy they have here and he seems to love it.
It is fun to see David dressed in “real” clothes. I am seeing this as just one of many things you and the entire medical team are doing to make more of life as a baby boy and less of a life as a patient. The care I see is a wonder and I give thanks to God everyday for this. I pray God’s care continues to hold you, Adam, Eli, Anna and David close.