As I was walking out of the hospital this afternoon with a red wagon filled with Jacob's supplies, new medications, and bags filled with clothes and snacks, I ran into a dad I work with in the hospital. He was carrying a big cup of coffee, looked tired and I could see that he hadn't had time to shave. His daughter has a blood disorder. She had started to vomit blood last night. By midnight they were in the PICU. As he was telling me what had happened, I could hear how worried and concerned he was because her labs don't match up with how sick she had been overnight. He was hoping she would quickly feel better, so they could spend Thanksgiving at home as a family. As he was walking towards the glass elevators to go up to the PICU, I heard my name. One of our Mito families was waiting for their car. They came up to Children's for the week to crank out a series of doctor's appointments, since the kids are out of school. They are hoping to spend Thanksgiving with family in Colorado Springs in between spending time at the hospital. At that moment, it sank in how incredibly happy I felt to be leaving the hospital behind me.
The holidays are a hard time to spend in the hospital. We all have our traditions and expectations of the holidays, and to have a sick child in the hospital is typically not part of that picture. Last year, we brought Thanksgiving to Children's. And yes, by the end of the day, being together as a family is the most important thing. But have you tried to serve a microwaved Thanksgiving dinner on a hospital bed side table? It is just not the same.
Over the last week, the hospital has started to put up their Christmas lights. Each time I have seen someone working on it, it has made me a little sad. The lights are there to bring the spirit of the holidays to the hospital, I get it. The problem is that it always has the exact opposite effect on me. It is the one reminder that our boy always needs the hospital this time of the year. I just wish that one year, I don't have to watch the blinking Christmas lights from a hospital window.
So tonight, I am incredibly thankful that Jacob's medical team decided to let Jacob go home despite still having a bad flare up of his colitis. We are measuring each diaper, replacing his stool output, and he is on a hefty dose of steroids once again. We are right now holding off on the next level of medications, since they all come with really nasty side effects. We are hoping by giving Jacob a couple of weeks, maybe the steroids will kick in and put his colitis in remission? Suddenly steroids seem to be the "easy" decision. There are also still some tests pending regarding Jacob's absorption, which could force some significant changes to his diet depending on the results.
With two days left before the holiday, I am hoping to get my house in order after having been gone for 10 days. We're also hoping to get some cooking done, but most of all just spending the holiday together at home.
Love, Maria.
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