Cherished and never alone.
Day 24:
We received an overnight package of meds today holding a $7,000 medication. Tate gave herself her first shot tonight of an additional immunosuppressant She’ll continue to get these every two weeks. Praying this is the medication that will hold off further Behçet’s disease progression. I give thanks daily for the blessing of insurance. So extremely grateful!
Middle of the night excitement (or annoyance) was an occluded port again. X-ray this morning confirmed a focal kink. The port worked okay today so for now surgery wants her to heal more before fixing. If tonight makes night 3, that may change the plans for surgery.
Morphine pca was turned down again this afternoon. Clinician bolus moved to oral. It didn’t go well. Pain crisis tonight. Morphine pca dose Is going back up. Bolus moved from oral back onto pca. Ambien is moved up in the med schedule. Pain gets tricky once you get behind. These are the backward steps that are disheartening. Tate is scheduled to be on ketamine until tomorrow morning at 11. This was supposed to be our window to decrease the morphine. Tomorrow they’ll come up with another way.
Rheumatology was in tonight and in her 25 years + of medical practice in pediatrics, she’s seen 5 behcets kids and none with Behçet’s GI ulcers. This makes managing and understanding them difficult. Tates knees are flaring and puffy with fluid, the bruises are indeed behcets related and labs tomorrow will determine where we sit with increasing steroids again despite the challenge they pose to healing. It’s hard to know if we were masking symptoms with the other pain meds, if we’re adding a lupus flare or if this is Behçet’s disease progression.
More than anything tonight, my heart is hurting for some people I love dearly. New diagnoses are scary and painful. Please pray for peace and guidance and quick answers with solid treatment protocols. But mostly pray that they feel their heavenly fathers love above all other emotions and to know how much they are cherished and never alone.