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. … Continue reading May 7, 2024
Tag: Dani
May 6, 2024
David did not have many changes for today. Apparently his lipids were restarted last night since the order was never removed from his chart. So today, they were stopped once again, and David became free from all except his feeding pump again. David was also started back up on digoxin. He will need to be … Continue reading May 6, 2024
May 2, 2024
Well here we are. Another day, same results. Before we get there though, let's talk about the highlights. David only had 1 change that came out of rounds this morning - reduce his milrinone again and see what he does. It has a long half-life, so effects won't be noticed right away - and with … Continue reading May 2, 2024
May 1, 2024
Happy half-birthday David! There's just so much I want to say and so much emotion bottled up into today, but it’s also getting late. One year ago, we were likely thinking today would be his first day eating some purees, which would probably be sweet potatoes like his siblings. Six months ago we did not … Continue reading May 1, 2024
April 16, 2024
David's cardiologist came and spoke with us first thing this morning. She had spoken to his surgeon since we last spoke yesterday, and since David is progressing, albeit at a snail's pace (my words, not hers), he doesn't want to make any decisions about David's future at this time. He would like to see how … Continue reading April 16, 2024
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 … Continue reading April 15, 2024
April 12, 2024
David's big change is he was on CPAP all day and all last night! After seeing the ventilator today, I realized he still has a PEEP of 8, which he adores, and CPAP just doesn't add any additional PEEP like BiPAP does. BiPAP has a pressure support that's higher for inhaling and a different pressure … Continue reading April 12, 2024
April 11, 2024
Small changes for David today. His feeds had increased fortification added to them - from 22 kcal to 24 kcal. He was on a weaned vent setting for SCUBA last night and did well (12/6) - reduced PEEP even. We know his lungs really appreciate a PEEP of 8 though, so he was on RAM … Continue reading April 11, 2024
March 26, 2024
Today, David's right upper lobe of his lung is more collapsed, so to try to get that opened up David is now on SCUBA for 4 hours followed by RAM (I think this is the term they used - I'm not sure if it is BiPAP or another setting but it's with the nasal cannula) … Continue reading March 26, 2024
March 25, 2024
Busy day for our little guy. For the third day in a row, David needed his art line dressing changed. His stools are super liquidy, which is a sign of withdrawal, and they keep finding a way onto the dressing. He is off all his IV sedation drips now, and you can definitely tell he's … Continue reading March 25, 2024