October 30, 2025
It has been a full medical week and I’m way behind on any updates. Sometimes the emotional place this medical journey takes you makes it difficult to figure out how to share. Hospitalizations give something concrete for outsiders to grasp onto. And we appreciate the support. Whats difficult is that none of it goes away once we’re home. The decision making all falls on us. Tate is left to handle her pain with only what we have at home and the responsibility of it all sometimes wants to tip you over. We work hard to fit in “fun” things too. But sometimes the energy it takes is just too much that theyre not so fun anymore.
So often, Tate can rally and put on a smile. Her cup is filled through social interactions, so that is truly when she is her brightest. But the reality of her daily struggles felt heavy this week. Appointments Monday with a couple of Tates primary specialists brought to light what we had already lived through….
We almost lost Tate last week. It has everyone a little rattled as we don’t fully understand what got us there, which makes it harder to prevent. Weve faced this many times already. But not fully on our own and not at home. We have stricter advice to inject sooner and call an ambulance. I thought Tuesday was going to bring take 2.
Monday night it was very evident Tate wasn’t feeling well again. And by Tuesday, we were teetering on heading back to the hospital. Several phone calls with her team, hours later, lots of tears and we got Tate’s body calmed down again.
Today and tomorrow are Tate’s 7+ hour IVIG infusions. Tate has really been struggling with pain and nausea and when home is sleeping most of the time. Ivig revs up pain even more so likely the weekend will feel long for Tate.
There’s been some bright spots too that I’ll share in a later post.