Anyone who has had their life path diverge from “normal” for a sad reason, out of their control, will understand what I am about to say. I am acutely aware of where I am supposed to be on any given day. This goes for my children, too. Actually, more so for my children. It started last January when Reese was in the PICU during the precious days that my children were supposed to be experiencing Disney World.
While I walk down this life path, looking for joy where ever I can, I always know there is a different path. A path that made sense.. where my 4-year-old didn’t experience this kind of pain, where living in a hospital wasn’t even remotely in my reality. Where my other children went to school, visited parks with other people, ran through a yellow house, and could count on a mom to live with them. And I did things like have a glass of wine with my besties.
I don’t dwell on it, I am far too busy and I don’t have the luxury of being selfish like that. But, these thought enter my mind, like white whispy clouds, and then dissolve as quickly as they entered, as I refocus on my mission. Deliver Reese safely through this mess.
So what is the latest? We are still inpatient. We love our team, Reese loves all of her “friends”. It is exciting when we see one of our beloved faces show up at the door, the people who worked so hard to make Reese better. This is the part of this stay that has been great. The people. But, this has been hard on Reese, harder than I thought. She sobbed for an hour today, begging me not to make her live in a hospital. While 5 days may seem like little compared to 8 months, it’s not to this small girl who saw freedom. I watched her morale start to tank as today wore on, and I know that she is building up a new fear for this place, a fear that was actually not in place when we left. Her sisters and Nonnie and Poppy rolled in late this afternoon, which was just the boost she needed to power through the rest of the day. Her family has been missing from this stint. This is because the stomach flu continued to run through my family and we had to wait 48 hours for Quinn to come to the hospital.
Why are we still inpatient? Because Reese’s potassium is low. Too low. It isn’t safe for her to return home until it is stable. There is a sweet spot when it comes to potassium, and our team is working on getting her there so that we can leave and manage it from the Family House. The good news is, it was perfect at 3pm today. Besides that she is BETTER. She ate more today than she has in weeks. Her other labs look great and she is strong and ready to go!