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
Author: Jess
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 … Continue reading June 8, 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
June 5, 2024
There's really not much to report for today. Apparently David was quite fluid positive yesterday. So much that I almost suspect an error in the reporting. In any case, since his kidneys are still holding at a very good position, his diuretics were increased again. David's been receiving IV diuretics for a couple weeks now … Continue reading June 5, 2024
June 4, 2024
David had a fairly good day. When I arrived he was already awake and sitting in his high chair rocking out to Taylor Swift. In fact, he was greeting everyone who walked past his room. His provider thought he should still be sleeping. That's the thing about Davids - they take 2 morning naps and … Continue reading June 4, 2024
June 3, 2024
Well, today the doctor decided to order the respiratory virus panel test. That was an intense few hours of our lives. As soon as they tested him, David had to be in isolation. This means our family is pretty much confined to his room - with the biggest issues being no End Zone and no … Continue reading June 3, 2024
June 2, 2024
Yesterday they made mention a couple of times how David will likely go upstairs this week. Today, David responded with “will I?” Once again David is throwing some curve balls, and no one is quite certain what to make of it. After all of those gaggy episodes yesterday, they opted to stop his protein today. … Continue reading June 2, 2024
June 1, 2024
Today David turned 7 months! He eventually weaned down to low flow, but not until this afternoon. Really the only change for him today was with his diet - they added in some protein (amino acids I believe). This afternoon David was very gaggy and spitting up a lot. It’s hard to say if they … Continue reading June 1, 2024
May 31, 2024
Today was kind of an up and down day for David. They were able to wean his oxygen support fairly quickly overnight from 12 liters at 40% oxygen to 3 liters on room air. The nurse overnight thought he may not have needed the high flow, but was afraid to take it off in case … Continue reading May 31, 2024