Post BMT day 282
+282
This week Tate saw GI, dental, Endocrinology and had her regular PT sessions with Abby. With GI we discussed various options as they aren’t yet satisfied that Tate is eating enough to reduce her TPN/Lipids. Her labs are continuing to show dehydration so we’re increasing fluid intake with more IV fluids and running pedialyte through Tates feeding tube (J tube) at night. We tossed around some other things to try but GI ultimately was worried about Tates electrolyte balance and was afraid timing wise, it may land her in the hospital over Christmas. Rather than take that chance, we’re not rocking the boat too much.
Dental went well enough. Tate has a purple tooth stained from a treatment they did for thrush post transplant. Seems it’s here to stay. Years of medications, treatments, chemo and just being sick has taken its toll on Tates teeth. She is unhappy with how they look, but dental was fairly happy with how they’re currently doing.
Endocrinology was essentially for antibody testing. Pre transplant, it appeared that Tate was on the fast train to developing type 1 diabetes. She had two antibodies that were found on labs showing her body was attacking her islet cells in her pancreas. The hope was that transplant would eradicate the antibodies and halt the disease process. We know that Tate still is positive for one of the antibodies. We are waiting for lab results to see if the second one is still present. If so…..we add it ti the growing list of symptoms and labs making us ask why things seem to be coming back. I’m hopeful that it’ll be negative and we can but the question of type 1 diabetes to rest. This appointment ended up being 4+ hours as regular lab can’t draw off Tates central line. We eventually landed back on 7 in the hem/onc infusion center for labs. We got to squeeze Carissa….our infusion nurse who used to work at North. A bright spot in our day!
Wednesday evening the Regis softball team impact girls that live in CO came for chili, cookie decorating and a brief Christmas light walk (it was cold!) These girls gave up an evening to spend with Tate and are just so lovely and fun. Coach Nicole and her 2 year daughter came too. So so thankful for this amazing program!
Thursday was really rough for Tate with pain. She’s back in the wheelchair as it’s just too painful to walk. The highlight though, was Tims mom, Sandy, was waiting here for us when we got home from appointments. (pictures to come)
Today Tare didn’t get out of bed. Bone pain has been worse the last couple days not giving her much relief during the day and making night’s pretty restless. We are so anxious to figure out the source of this and why it’s getting worse. Tomorrow we start another, stronger pain med. praying it helps!