Two steps forward, one step back. This is what the doctors told us to expect with severe gvhd. We sat in a terrible holding pattern for three weeks in June, so it was hard to visualize what this would look like once we plateaued and headed back down the hill, toward wellness. Reese has good days and less than good days. The steroid wean was successful and they have also gone down on her pain killers (continuous pump) and another prophylactic. This is all great news. She is digesting a little bit, this is also incredible! Her gut lining has a lot of repair work to do and we are told it will take quite some time to heal. She has a continuous drip of formula that is really easy for her tummy to break down. This has doubled (from 2 ml to 4 ml an hour) and she is tolerating it well! She is still on 100% TPN for nutrition, but this is a move in the right direction.
Yesterday I left the hospital in the morning and spent a whole day with Quinn and Claire. A whole day! I haven’t done this before and it was so good for all of our souls. My sweet little girls, it felt so good to be their mom all day. I got back in time for dinner, and had an intimate meal with Reese. Soup for two, on our finest china.
Reese and I have been together for 75 nights in the hospital at UCSF. My husband has stayed a handful of times and even my mom did a couple shifts. It really blurs, the days. It’s hard for me to grasp the passing of time. I proved this the other day when I was sure an old event had happened the day before. I am so blessed that people support me and love me and pull me out of the hospital haze, if even for a few hours of sunshine. I just WISH we could do that for Reese. I would give anything to take her place, to give her a day in the sun. She so deserves it. In the meantime, I try my very best to fill her days with lots of “5 minutes of fun”. Quick activities that she can participate in. I hope that some of these will be filed away in her memory, instead of pain. If I can replace a memory of hurt with something better, as often as I can, I have done my job.