Post BMT +139
+139
Day 14
And…we are out! It ended up being a morning of discussion. Should they discharge? Should they not? Where to next with the neurological issues? The reality is that although the acute bacterial infection in wrapped up tight, Tatum actually presents more sickly than she did going in two weeks ago. The attending on this week, Dr. Ralph (one of my very favorites-he wears a bow tie and loves dogs almost as much as Tate, and is both brilliant and kind,) believes that because of the brain involvement, Tate was actually septic, which means a longer recovery time. My perspective on our current situation is that what we are dealing with in the immediate moment is chronic (GI) and just not explainable (neurological symptoms) that to sit in the hospital to figure it out isn’t helpful either. It’s probably up there as one of the most unsatisfactory discharges-not due to care but just to the enormity of what us still our daily reality.
There were brain changes on the MRI. The combination of those, the EEG results and current neuro symptoms are disconcerting. There are various theories with drastically different outcomes. The only way to an answer is time. There is no treatment or meds. Just hope and a prayer that Tate’s body will heal itself.
We got in a pentamidine infusion (for her lungs,) a methyl naltrexone injection to get her Gut moving and some last minute extra labs before discharge today. Dr. Eissa, Tate’s BMT Dr. Is back from his vacay and patiently talked through all scenarios with me today. That is MY coping skill..knowledge. So I am grateful.
Tomorrow is a day to pack up the rest of the apartment with plans to move out permanently either Thursday after appointments or Friday. Can’t wait to get home!
Tate is running higher temps for her again all evening and into tonight. Please pray her body settles down and we can stay put tonight. I’m afraid to check it as I’m so desperate to stay out of the hospital. The constant tremors, nausea and pain have her absolutely exhausted. She “sleeps” but her body doesn’t rest. Video in comments if you’re interested. We are so looking forward to getting to our home and enjoying all the little things that we once took for granted. Coffee on my front porch is one of my favorites! Late night chats when Keira gets home from work and jumps onto our bed to fill us in on her day is another. My OWN laundry machines and detergent. So many things….