Navigating Life's Detours
Finding the right path for a teen with special needs
J.P.’s hospital stay: 1 month later
It’s been one month since J.P. arrived at Florida Hospital for Children by ambulance. It was the week before Thanksgiving, and we prayed we would make it home in time to celebrate Turkey Day with our family.
I can’t believe we’re now wondering if we’ll be home for Christmas, and I’m beginning to believe the answer is probably no.
We’ve never spent Christmas in the hospital. When J.P. was much younger, we paid a visit to his neurologist’s office for a VNS setting change on Dec. 25, but this would be the first time inpatient.
We haven’t yet broken our record for longest stay in the hospital — which is 35 days — but we’re getting awfully close.
I recently wrote about some of the lessons I’ve learned from this hospital stay, but I’m also beginning to understand the emotional and physical toll these stays have on parents of chronically ill children.
The most apparent thing I’ve noticed after 30 days in the hospital is a difficulty to answer simple questions from a nurse or doctor. They ask questions like, “How long has his central line been in place?” or “When was his second shunt surgery?” I have no idea.
I can say something like, “The central line was placed during his second surgery,” But I can’t tell them immediately when that was. The days have all blurred together.
I haven’t had problems trying to determine a course of action after certain medical events have taken place. J.P. is vomiting again, so I know we need to stop feeds and return to IV fluids. Give his tummy a break, and restart feeds slowly.
I even know that we need to give him a dose of Zofran when we restart the feeds. If we still have issues, we should investigate using Reglan or consider possibly returning to a GJ feeding tube instead of a G tube.
But I’m weary, and I know my wife is weary. We’re trying to hold it together, but we’re short with one another and don’t always agree on what to do next.
I’m eating more junk food than I should, and I’ve gained weight. I’m not running much, and I don’t have the energy I’m used to having. I am trying to climb the stairs at the hospital instead of taking the elevator.
I’m sad. I’ve heard some things from doctors that scare me to the core. Some doctors I can dismiss and say they haven’t been on J.P.’s case long and don’t know him like we do. But when the doctors who do know J.P. make an observation about his quality of life or longevity, It just hits me hard, and I sometimes feel like an emotional wreck.
It’s all happening during a time when I’m used to celebrating the holiday season, and that’s been stolen this year by the Grinch, it seems. Seriously.
Our house is a clear indicator that Christmas didn’t come this year. No lights. No trees. No decorations.
It’s a consequence you face when you have a medically complex child, and there’s nothing I can do about it. At this point, I’m not sure if it’s even going to get better in the near future or if it could get worse.
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I do not “like” this but I hit “Like” to let you know I read it, and I care about what your family is going through. You are in my thoughts. I spent eight Christmases at a hospital when my father was there. It’s hard to make it merry. My love to you all.