First of all, I think this has been the hardest stay in the hospital. Madison was doing awesome until last week and now we just have tons of questions.
The procedures yesterday looked fairly good to the eye, but as results come in it is clear there is a problem. Inflammation in parts of the stomach make us wonder if we're dealing with chronic gvhd or if an unknown virus has been the issue. Praying for more results tomorrow.
In addition, her levels have been all over the place so praying she is back on track tomorrow. Her adrenal glands are working! When her body is under stress (virus of surgery) we will have to keep a close eye on her levels, but all is in normal range (thank you God).
This journey is long! Our friend Collin has been here with us all week and he was diagnosed 9 months ago! We love our Cardinal Glennon nurses, doctors, etc., but stays in the hospital are hard on all of us! This trip has been filled with many emotions! Summer, a time filled with days in the pool, memories with family, baseball games, etc...for Harrison, Mae, and Madison it is fear we will be seperated for weeks. No, we plan to return home this week, but explaining to Harrison and Mae this visit when all they remember is last summer is difficult.
As we visit with young children who are spending another season in the hospital tears fall from my face. Please take time to pray for all the families that are seperated.
Madison brought several smiles to those around us today... She is getting really good at riding a bike❤️
Harrison and Mae cleaned house today in hopes Madison would be home. Praying tomorrow she is discharged.