Day +39

So I won’t rehash in detail all that has happened in the weeks since my last real post. Basically Chloe gained too much fluid for our liking and we felt that immediate intervention was necessary. We pushed to have her transferred to Texas Childrens on Nov 3. She stayed in ICU for a week where the interventions were continuous diuretics, continuous measured feeding of breastmilk, and restriction of all extraneous fluids. After a week, she had made significant progress and we were able to move to the Bone Marrow Transplant unit in TCH.

We were progressing slowly towards discharge when, this past weekend, Chloe experienced severe morphine withdrawal – an agonizing experience for all of us, but especially her. She will now need to take other medication to wean her off the morphine, and we have resumed slow steps to lead us to discharge. There have been many, many difficult times lately but we continue to see a few glimmers of our former happy baby and we hope every day leads us closer to going home and getting "normal life" back.

We were able to confirm that Chloe did engraft, meaning her bone marrow is making only the donor type red blood cells, not her own red blood cells. So the transplant process itself was successful. We will now just have to wait to see if it has a positive impact on her.

I hope not to jinx it, but our current target discharge date is Monday, November 24th. Once we are discharged, we will continue our follow-up care here at TCH.