But being home doesn't mean Jacob is back to normal. I sometimes struggle to answer the follow up question: "how is he doing?" I see the bright smiles and everyone wants to hear the good news. I sometimes struggle on how to best answer that question. For Jacob to be home would mean for most other kids that they would still be in the hospital. Over the years, Jacob's room has turned into a mini hospital, and we take him home as soon as he doesn't need intensive care any longer. It is part of our quality of life decision for him. We know Jacob will always do better in his home environment as long as he is medically safe in our home.
Coming home from the hospital means that Joakim and I often are pretty exhausted. We have fallen behind on work and chores around the house. There is a lot of catch up to do in the middle of Jacob needing more care than his baseline. This past week, we have changed and measured more diapers than I would be able to count. Jacob has had the diaper rash of this century. We monitor Jacob's vitals constantly to make sure he can hold his body temperature and oxygen level up. We have done more laundry each day than we typically would do in a week (and we do lots of laundry around here). We manage Jacob's stomach pain. I have Jacob's GI doctor on speed dial, and med changes are a daily task including running to the pharmacy for new prescriptions. Sure enough we also had two days at Children's for already scheduled doctor's appointments we couldn't pass up on. But who wants to truly hear all that? It's exhausting.
So, why do I write it hear? Maybe because I might not never really tell you face to face how it truly is when we get home. I do want your smile and I do want you to root for my boy, who by the end of the day is the one who does the heavy lifting around the house. It is a lot of work being Jacob, and he always, always does it with grace no matter what the day brings him. And then the hard days turn into better days. Today was a beautiful day in Colorado, and Jacob was suddenly warm instead of cold. Jacob's color was "Jacob perfect", and he gave me his quirky smile right before bed time. He is starting to feel a little bit better again, right in time for his birthday week.
Jacob rooting for his sister playing in a volleyball tournament today! Yes, he's taking a nap after literally staying up all night...