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May 25, 2024
As David’s provider summarized it today, the plan for the day was no changes. Although, that wasn’t exactly right. She compromised with the doctor apparently about his diuretics and they went up on it, but just slightly. David is still very much fluid overloaded, and his lungs are feeling it. They have him on oxygen,…
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May 24, 2024
What a crazy day! During my drive down, the check engine light started flashing, which is exactly what I wanted on this rainy morning when David was leaving the room for some field trips. David was still sleeping at this time, and being about 20 minutes out from the hospital, Adam came and picked me…
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May 23, 2024
David’s day started off where yesterday left off, but by afternoon he was doing much better. He is super fluid overloaded after his blood yesterday, so today was mostly trying to get some of the fluid off of him. His kidneys are loving the fluid though (his lungs not so much). He was a little…
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May 22, 2024
Well, after several good days in a row, it was about time for David to have a less happy day. He had an exciting day with therapies though. He didn’t have much change round-wise, but there were lots of discussions about his potential g-tube and what’s the next step if his bleeding returns. It sounds…
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May 21, 2024
Another good, stable day for David. It’s funny, the folks who haven’t seen David since last week keep wondering what changed because he’s so happy now. The only thing that I can think that has changed was his valium dosage. Whatever it is, since Saturday, he’s like a different baby – full of smiles, takes…
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May 20, 2024
Today much of the excitement did not occur in David’s room – but rather outside of his window. We had just finished rounding on David (I think around 9) and had not yet dispersed when the lights (well, actually everything) went out. The nurses remained calm and sprang into action to check on anyone who…
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May 19, 2024
I would like to say this was another great day for David. He was snoozing in his swing when we arrived today, so Adam and the older kids went down to the family lounge for a snack, while I hung out with David. He woke up around the time they finished their snack – I…
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May 18, 2024
Today was a pretty good day. For the most part, David was happy but also shared his displeasure when being pushed to do things he did not want to do. When I arrived, David was asleep in his wagon – his nurse clearly knows what makes him happy! Once he woke up, he hung out…
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May 17, 2024
t’s hard to say how David is doing – he still fusses quite a bit when he’s not moving around in his wagon. However, it’s hard to know if he’s uncomfortable about something or just expressing his dislike for his helmet. He seemed to enjoy his mama roo this morning. After enjoying those swings for…
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May 16, 2024
Today was a relatively uneventful day for David. When I arrived, I found out that David and I had the same sense of fashion today as we were both wearing our Buffs gear. He was apparently happy early this morning, but by the time I arrived, had returned to his “normal” level of fussiness. We…