Highlights of today include resuming feeds, Fern time, and tummy time "fun". First off, David's feeds. He still has small flecks of blood in his stool, and for now we're just going to accept it and resume his feeds. After consulting the GI doctors, they do not think he has a dairy allergy. They said … Continue reading April 22, 2024
Tag: Rachel
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 10, 2024
They weaned David's ventilator setting today, and he was able to stay on the RAM cannula with it. He's still on BiPAP, there was some discussion as to whether he is ready for CPAP, but ultimately, David likes slow movements, so BiPAP it is. He'll go back onto SCUBA tonight at that lower setting as … Continue reading April 10, 2024
April 8, 2024
The analogy I will use to describe today is as follows: we were off on a hike down the trail, but we lost our way (or maybe we ended up on a deer trail). Although, we were heading in the approximate direction, we're going to take a few steps back to find the trail again … Continue reading April 8, 2024
April 4, 2024
For the most part, not a terribly exciting day, which means it's a pretty good day. The best part is that David's smile has started to return! He has such a great smile - but he's very selective as to who he shows it to, and whether a camera is present or not. David spent … Continue reading April 4, 2024
March 28, 2024
Small changes again today. First, after 43 days, David's art (artery) line was removed. This was in his left femur, and close to the groin - he was starting to get it dirty every day from his diaper and he started to get a sore near it. It was time for it to come out. … Continue reading March 28, 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 21, 2024
David had a great day! He tolerated a sedation wean over night, and then again this morning. He was doing so well, that they weaned him again this afternoon and may wean it again this evening. He's mostly happy when he's awake and falls asleep calmly. His pneumatosis seems stable. They switched him from 2-view … Continue reading March 21, 2024