One week. It's been one week since we said goodbye to David. I've wanted to post something for a while, but it is a struggle. If anyone is familiar with Randy Pausch's Last Lecture, at the end he said the whole lecture was a head fake. It was not a lecture for those in the … Continue reading June 27, 2024
Tag: Rachel
June 17, 2024
So, I'm sitting here at home and don't know what to do with myself. There is plenty of stuff to do here that has been neglected the last few months since it didn't seem as important as being with David, but my mind is still with David tonight. I was able to spend last night … Continue reading June 17, 2024
June 13, 2024
David earlier today. No one knows why he crashed. He had gagginess this morning, but had lots of periods of happy play time too. He even made a recording of his heartbeat with music therapy. He received compressions for a long time. Only time will tell how it may have affected his brain and other … Continue reading June 13, 2024
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 … Continue reading June 12, 2024
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 … Continue reading June 9, 2024
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 … Continue reading June 7, 2024
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 … Continue reading June 6, 2024
May 27, 2024 (and May 26, 2024)
Well, I had a post drafted yesterday, but never had time to review it after needing to reorganize the freezer (which was not on my list of things to do last night). The night ran away from me at that point, so I abandoned ship. Today I'll try to recap both days; however, there are … Continue reading May 27, 2024 (and May 26, 2024)
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 … Continue reading May 22, 2024
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 … Continue reading May 20, 2024