It’s hard to believe we have been here 92 days. 81 days post-transplant+Day 0+10 days pre-transplant=92 days of hospital Shangri-la. The last two days we have had a setback that will delay the d-word. Reece is fluid-up and tends to be quite sensitive to his weight. Yesterday a CT scanned revealed fluid leakage in his lungs and fluid retention in the lining of his lungs. Therefore, he has labored breathing and is needing blow-by oxygen, at times, to keep him comfortable. All other things are looking okay at this point, so there is no indication that it is another hemorrhage. Still, we will be here until at least early next week.
- Reece’s weight to come down and stabilize
- Fluid to clear from Reece’s lungs and supplemental O2 needs to be removed
- Healing and improvement in all things BMT
- Reece’s rash to leave for good and steroid taper to go well; insulin needs to go down
- Remission, life, and discharge
I’m not sure there is much else to say on this. We have been here long enough and are so used to being here that it is what it is. I am full-term on Sunday, so if the baby comes, the baby comes. I have completely surrendered to this process, so it doesn’t feel stressful to be here. I feel more stress in going home and managing everything without the nurses, docs, and machines helping us out. We have additional time to practice caring for him here before we are sent out to do everything on our own. I said it before and will say it again…we will operate similarly to nurses in our home, but with very little training. Additionally, the control freak in me is struggling to comprehend all that we will be required to do and then be out of the loop for a couple of days at the hospital for the birth of bambino #3. I would almost rather have her before Reece leaves the hospital so that when he does come home, we are all there for good. It’s our thirteenth weekend here, so we know how the routine in the hospital goes; it’s the routine at home that seems daunting. I still more than anything want him home, so I hope it is early next week. Reece’s body will tell us when he is ready.