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November 19, 2023
Thankfully not much in terms of an update today. Eli, Anna, and I spent most of our day hanging out with David. Anna just dotes on David – she loves to caress his head and arm. She also lets us know when he’s crying “David’s crying” and said she wants to give him a hug…
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November 18, 2023
We had some answered prayers today. The results of the CT scan came back, and the pulmonology team does not see any issues with David’s lungs. He remarkably does not show any signs of having nutmeg lung. There are some pockets of his lungs that haven’t fully opened up, but they should as he grows…
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November 17, 2023
Today has been a learning day for all of us as we learn how to work with David for his eventual discharge. There’s no clear date as to when that will be, but his main focus for now is learning how to eat orally. The cardiologists said there is nothing as it relates to cardiology…
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November 16, 2023
Today was our first day in the new unit, and I think it went fairly well. It’s a lot quieter up here, and we don’t have much reason to leave his room anymore since everything we need is here. The nurses are trying to keep us involved in his care as much as possible, which…
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November 15, 2023
Two weeks! David has been amazing us for the last two weeks – it has certainly flown by. Also, once we think we found a rhythm, things get disrupted and a new routine is figured out. He had a big day today, but also a lot of rest. The day started out with him going…
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November 14, 2023
David has been very sleepy and calm today – they said he slept really well over night too. He seems to have finally overcome his withdrawal symptoms and is now a happy, sleepy baby. He’s completely off of his milrinone which was administered through his IV and switched over to captopril which is an oral…
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November 13, 2023
Another great, uneventful day is in the books. David weaned off another one of his IV meds which was replaced with an oral medication. His ventilator was weaned from BiPAP to CPAP settings. He had another chest x-ray this morning, which again showed improvement, and he had an echo to check on his stent placement.…
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November 12, 2023
Lots of small changes for little David today. I had a detailed conversation with a nurse practitioner this morning and she explained many of the things that are happening with him. Ultimately, it ended up being his heart is the trickiest thing to manage at this point. His blood pressure and heart rate start to…
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November 11, 2023
Today was a day of mixed emotions. David himself had a great day! He got in lots of snuggles with Mommy and Daddy, and both of his siblings got to visit him. This was Anna’s first time meeting him and she absolutely loved him. David also had OT for some more massages and stretches, and…
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November 10, 2023
David had a really good day today. The good days are less draining that the tough days. Overnight, they were able to find the right balance of medications to bring his blood pressure down and allow him to find some comfort. He was resting nicely when I arrived this morning and his last few labs…