I wrote the title of this post almost a year ago, and I had no idea how true it would prove to be. At the time I had just been told by the nurse in charge of discharging transplant patients that we would be sent home before Christmas. (I've said it before, but it bears repeating that in the BMT world, NOTHING is certain until it actually happens...) Nevertheless, around that time we were planning to go "home" to the apartment in Cincinnati after almost 6 weeks in the hospital. It was scary for me, as I knew that I would become Nathanael's primary caregiver and would have to give IV meds, milk and meds via the NG tube, and would have to carefully watch him for any signs of illness or infection. It felt like an impossible task, and I even created a spreadsheet for myself to use as a reminder of everything we had to do (and so we could write it down so we didn't forget that we had done it!). I was glad that my mom was going to be with me, but I still had no idea that I'd learn to do so many things, and would become so comfortable with them.
What I had no idea about at the time was that it in a year we might possibly feel like we had made almost no progress. Well...it's not really true that we've made no progress, but it often FEELS that way, since we still live in isolation, we still give oral meds 3x daily, and we still obsessively wipe and clean anything that Nathanael is going to touch. It breaks my heart to hear Jamison tell me that he's sanitizing his hands (3x in 10 min the other day) to keep Nathanael from getting sick, but that's such a big part of his world...and I'm not sure how it can be any different right now. Yes, the central lines are gone, and we've stopped some meds, but then we added some to our home routine that used to be done at the hospital. And it feels like we're always on the brink of another inpatient stay. Ugh!
Several months ago Brad asked me if he thought we'd all be in church together for Christmas. I think I laughed at him. That wasn't very nice of me, but it seemed so unrealistic, and I couldn't even dare to hope for that. Now I think I'd just like to get to church together NEXT Christmas. Yes, we were told 1-2 years for the rebuilding of a healthy immune system, but we're ready to be done with this ordeal NOW. Out of the frying pan into the fire, indeed.