Post Transplant Day 363
+363
Procedures yesterday went fine. We were there by 7am and heading home around noon. We ended up doing the GJ exchange with a longer J tube to prevent intestinal “tenting” that was causing irritation. And the spinal tap although improved since August, still shows some potential inflammation. An ultrasound of her L ankle shows joint damage from an undetermined source and labs that came back confirmed autoimmune through a still high ANA (since August.) There was hope in August that this was ivig related. This confirms it wasn’t. Labs were all over the place including dropping HGB and RBC. So although procedures went “fine,” findings outside of them weren’t as benign as we’d hoped.
This last week pain continued to progress. We doubled Tate’s narcotic dose, maxing out the every 3 hour prn option, with little to no response. She’s back to using a walker and wheelchair and often ‘scooting’ up and down the stairs. Nothing is moving quickly and we are anxious for next steps to get Tate feeling better. Not a great week for Tate.
Tim had a car accident yesterday when a road sign blew into him lodging itself under the car at 70 mph. It punctured the oil pan, and shredded and bent the tire under and twisted the axle. It took out the transmission. The car was called in by observers as a car fire as Sparks and flames were coming from under it while still driving it. The car is totaled. Tim and two colleagues with him had protection in order to walk away. The week before a rogue ice chunk caused major damage to our other vehicle. A bulbous eye from an infection added to his fun. Not a great week for Tim either.
We are praying for a better week with health and logistics. But are giving thanks for one year post transplant on Thursday, March 2nd for Tate. And it’s rare disease day. Cheers to our Tate who is rarer than rare. Made perfect in Gods eyes.