May 1, 2026
Days 43 & 44
The weeks buildup led to yesterday’s care conference. Tate had a pump refill yesterday to kick off the day. Med concentration changes meant she was locked out of any additional pain boluses through her IT pump until 8:30 last night. Not sure if that contributed to her rough night last night or not.
Tate hasn’t been feeling well the last 3 days. We had a slight fever this evening and a significantly low BP this am. She’s also requiring all her “extra” pain med doses throughout today as well.
Care conference yesterday was a good discussion primarily landing on how today’s medical system fails complex, chronically ill kids like Tate. We’ve made some decision changes for once we’re out of here which we thought was maybe going to be this weekend. But in reflection with the team this am, and due to the fact that Tate is currently using all her emergency meds while still inpatient leaving us nothing extra for at home, while still in tears this afternoon with pain, we’re not there yet. The latest methadone increase won’t level out fully until Tuesday. I was told today that we’ll still be sitting tight for a bit. The team is working on a better triage plan outpatient and updating Tate’s chart, in what’s called the FYI section, for when she does come back in again.
Grama Sandy is at our house for a few days and came down with keira today for a hug and a hello.
We are feeling a little desperate for a positive shift in the next couple of days. Tate is hanging in there, we just need a couple steps up the ladder to have a good home plan.