1 year + 51
1 year +51
Last Saturday was a fun endcap to another long week. Tate received an invitation to Hospital prom and the prom closet! It was a fun experience (and really good PT) for Tate to go and get to try on dresses and choose one to take home. She went into the day with reservation about prom and all the medical paraphernalia she will have to bring along, and left being reminded that every kid in attendance has challenges. Actual prom is May 12.
Getting to hang with other teens who understand the medical journey is a blessing. I never dreamed that my girls would be able to support each other, each knowing how medical has stolen dreams and changed life paths. But God did. This past week I’ve heard the girls late at night as keira will hang with Tate for hours of girl chit chat. I can’t fill that gap for either of them. I’m so grateful they have each other.
K is still battling some symptom but is on a watch and wait to recheck liver labs in a couple weeks. Referrals finally came through for some neurology support here. We’ll find out today just how long the appointment wait will be.
Tate has been in lots of conversations between rheumatology and nephrology regarding her kidney labs. We’re headed to run repeat labs for the second time this week. She’s likely looking at a kidney biopsy in the future. The concern is an autoimmune kidney issue.
We’ve been attempting to switch Tate’s liquid morphine that she gets every 3 hours through her G tube to a long acting capsule. But, yesterday’s conversations with pharmacists landed us with no solution to cover her high dosage. The liquid is doable, just not sustainable. Tate has an amazing anesthesiologist managing her pain. He’ll come up with something. We’re not ready to go the implantable pain pump route just yet.