What a weekend.
Friday Eli was really struggling. He was choking quite a bit and started to run a fever, as well as incredibly high resps and a high hr. We ended up calling the doc and they suspected pneumonia. Off we went. Eli ended up being admitted and they ran cultures on labs and urine. The choking episodes are really causing his little body to struggle.
Eli was discharged on Saturday, his 3rd birthday. We had a quiet evening at home and he was able to open his presents and spend a bit of time with the family.
He had an incredibly rough night Saturday night and was up choking a large bulk of the morning hrs. He slept in Sunday and has had countless choking episodes today.
The docs have tried to change around his meds but so far no change. While we were inpatient we met with a Palliative Care doctor and she is going to be joining Eli's team. It's time to have some serious quality of life talks and begin to discuss some "out of norm" options for Eli. She has some ideas and we are definitely on board with discussing them and working out a better plan. It was really refreshing to chat with her and we are going to be scheduling with her for a full sit down conversation.
I woke up this morning sick. I've got a sore throat and a bit of a cough. I'm definitely hoping that it doesn't progress as I can't afford to be sick.
I will get more updates up soon.