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April 5, 2024
David was pretty grumpy today. Most of the day was spent fussing if he was awake, and otherwise sleeping. Otherwise, he did not have a terribly exciting day. On his x-ray this morning, there didn’t really appear to be any changes to his lungs. Therefore, they did adjust his ventilator settings on his RAM to…
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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…
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April 3, 2024
Today was a nice stimulating day for David. He was apparently pretty grumpy overnight and not liking his SCUBA. However, his grumpiness remained after he got it off this morning. Once it was off though, he was able to fully participate in the wear pink day by sporting a pink hat and blanket. Due to…
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April 2, 2024
Today was just a fun day for being in the ICU – lots of laughs and lots of smiles. It’s super nice when everyone seems to enjoy their job and they all work together so beautifully. There were not many changes today for David. A slight increase in his feeds – 1 ml every 12…
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April 1, 2024
David is 5 months old today. Time has certainly flown by. Highlights of today included his weekly wound vac change. They say it’s healing up nicely and his surgeon stopped by this afternoon and said next week they will likely take the wound vac off and allow it to finish healing without it. David’s kidney…
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March 31, 2024
Happy Easter! Here’s a quick recap of the weekend: Yesterday, March 30th:Slight step back, which is not completely unexpected. Friday David was on RAM all day and SCUBA at night. They tried to do the same on Saturday, but David was a bit more agitated and had an increased work of breathing. He was eventually put…
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March 29, 2024
David has had another day with not a lot of changes. These are good days. He was super excited to have the nurse who has cared for him the most back today, and gave her a few of his rare smiles. The plan for today was the same as yesterday – RAM during the day…
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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.…
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March 27, 2024
Another day heading in the right direction. It makes Adam and I laugh when they introduce David in rounds now. Usually they give a short synopsis on the diagnosis and procedures so far so that everyone is on the same page, but lately they have just taken to “Now we have David Tilly our 4…
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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)…