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June 13, 2024
David is on ECMO. We will be allowed in his room soon hopefully.
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June 13, 2024
I am in the back of the room while the doctors, nurses and large team work to help David. He is currently getting chest compression as they wait for the ECMO team to arrive to put him on ECMO.
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June 13, 2024
Adam just informed me David is having rhythm issues and is coding. Please hold him in your prayers.
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June 12, 2024
David was kind of sleepy today. His day started off with an echo. He mostly slept through it until the probe was near his neck but this is always his least favorite part. Remarkably, he didn’t scream his way through it, but just kind of wiggled. He responds very well to holding hands, so we…
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June 11, 2024
This morning started off with a bit of a shocker to us, hearing that David was on the list to head upstairs. After yesterday, we thought they would like him to be a bit more stable before making the move. It turns out, that was the case and David probably has a few more days…
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June 10, 2024
It is my turn to write a post. So there will probably be some mistakes, grammatical errors and things forgotten, but hopefully it will be ok 😀 . Overnight last night David slept ok except for a 2 hour stent between 12-2am where he woke up and did quite a bit of coughing and gaging…
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June 9, 2024
Another good day for the Tilly kids. David’s fun activities included going down to his floor mat where he had tummy time, worked on the sit and standing position, and then just playtime. When he got sleepy, he went back up into bed. This afternoon, Bluey got turned on, and he started wiggling around with…
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June 8, 2024
Today was a fairly uneventful day for David. He napped a lot, and then I tried to squeeze in little bits of activities during the times he was awake. We played with some bananas in the high chair, followed by playing with some toys and reading Little Blue Truck. Afterwards, David returned to his bed…
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June 7, 2024
David is officially listed on the transplant list! I received a call at 1:40 this afternoon saying insurance had given the approval to go ahead and list. After providing them with his SSN, David was added to the list. There has been much rejoicing on the unit and everyone is excited for David as he…
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June 6, 2024
The transplant team met again this afternoon and this time had more data on David. Compared to last week’s meeting where we didn’t find out the decision until 3.25 hours later, this time we got the decision after a half hour. The entire team was in agreement – that David would benefit from a heart…