Transplant +17
Day 80
Transplant +17
Prayers are needed again for Sean. Still in the ICU, on a ventilator, the pneumonia is back and his heart is “agitated.” This boy has been through so much. Pray for healing!!
Tate is officially engrafted today! Her counts actually went down a bit, but a little bouncing is considered normal as long as she stays above 500.
A trickle water feed was started to try to start to wake up her stomach a bit and help calm the nausea. Tate spent the day sleeping and was awake for a bit this evening.
From a strictly BMT cell growing perspective, her BMT team brought up that she’d be ready for discharge in the next couple weeks. From an all other systems perspective, she has a long way to go. A care conference date will be requested on Monday to start making some plans on the best way to move forward. Moving her to rehab on 6th was also suggested as an option. Currently she’d need to go home on hospice for pain management, Homecare for iv meds and tpn & lipids as well as G-tube meds, formula feeds and central line supplies. She’d need PT and OT and would potentially need a hospital bed on our main level because we have a long flight of stairs to get to her bedroom. However, there’s no tub or handheld shower on the first floor and she’s unable to stand long enough for a shower. In addition, we’d need to be back in the clinic 3X’s week with a 2 hour round trip each time. We also have other specialists that will require many appointments as we work through the chronic issues she went into transplant with. We won’t know what is resolved and what will still need ongoing attention for some time. It feels Exhausting.
After the summer and fall we had trying to get her to transplant, then getting through transplant, as desperately as we’d like to be home, to think about just bringing the hospital back home with us again is honestly so defeating. I know Tate will get there, we are just on an extended post BMT path. Hopefully this next week we’ll see Tate taking baby steps forward to help shape a plan for eventual discharge that will be healthy both physically and psychologically. ❤️🩹