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February 14, 2024 – Update 2
David is still doing well and stable. He’s currently on by-pass, and surgery is getting close to complete. They expect to be able to take him off by-pass in less than two hours. Fingers crossed everything continues to go well. Also, apparently David wasn’t super fussy last night – he just didn’t want to sleep.
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February 14, 2024 – Update 1
Adam said David was a little fussy overnight, but slept well in his swing. They were cuddling when I arrived this morning, and David had just had a bath. They connected his IV and then I got my snuggles in. We got a few extra minutes of cuddle time in as they tracked down a…
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February 13, 2024
We met with the surgeon today. What I thought was going to be a complex, but otherwise a normal Norwood surgery is in fact not quite that. (Here’s another link detailing the procedure, and this one also briefly mentions the pulmonary artery bands and stents David has.) They had hoped to skip doing the Norwood by itself…
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February 12, 2024
Just holding steady today. Of course he had some weight loss. The weight gain yesterday was so large it wasn’t believable, so I wasn’t surprised to see the decrease today. However, we’re doing our best to not cause any disturbances with him before his surgery. I had forgotten to mention yesterday that if David is…
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February 11, 2024
This weekend was fairly calm – well, as calm as the chaos created by Eli and Anna. On Saturday, David’s weight was slightly down, so the team discussed increasing his volume again or holding steady for one more day. I did request we hold for one more day since I’ve seen a couple large spitups…
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February 9, 2024 – Details
A few days ago, I told Adam that David would likely have surgery February 15th or the day after Presidents’ Day since most of his major procedures have occurred the day after a holiday. He was born and had his first cath the day after Halloween. He had another cath procedure the day after Christmas.…
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February 9, 2024
Today we got the direction and clarity we had been waiting for. I will say I am very happy with the plan that they came up for him, and I’ll post more details later because I want to go to bed. Here’s a quick update. David is still in the hospital. He did gain weight…
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February 8, 2024
Well, today David lost weight again, so his team decided he should spend another day here. The dietician increased his feed volume so we’ll see where his weight is tomorrow. I think he’s come down with something because he has lots of thick boogies and a new rough cough, and when he cries is sounds…
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February 7, 2024
We were very frustrated yesterday and drilled the team with questions today during rounds. They believe David is in a position where he could have gone home today, and we disagreed for a variety of reasons. Mostly, it seems like he will be going home in a worse position than when he arrived and we…
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February 5, 2024
Slow and steady progress was made today. For the most part David was a lot happier. He had his CT scan this morning, so we’re eagerly awaiting the decisions that will be made tomorrow in which we’ll finally see the next stop on this journey rather than blindly following a path, not knowing where it…