The J.P. Story: Hospital holidays

Dad’s note: In honor of J.P.’s 12th birthday, I began writing “The J.P. Story,” which looks back at our journey through birth and into childhood. I hope you’ve enjoyed it. The 13th chapter continues to examine the challenges we’ve faced with cluster headaches and hospitalizations. To start at the beginning of the story, click here.

We’ve learned a lot about J.P. over the years, and one thing he’s done pretty consistently is to end up in the hospital around the holidays. He has also spent several birthdays there. I theorize that it could be that he likes to return to his place of birth on his birthday, but he has also been there on Paige’s and my birthdays. That’s a bit harder to understand.

It was beginning to look like we may be spending Thanksgiving and Christmas in the hospital in 2018. Unexplained pain and recurrent vomiting had sent us to the hospital in October and again in early November. We were discharged after a five-day stay and returned to the emergency room that night.

We knew the drill at this point, and so did many of the staff in the emergency department. However, we had a doctor who hadn’t worked with J.P. before, and despite our pleas and those of some of his consulting doctors, this doctor felt J.P. didn’t require admission to the PICU. We were placed in the Pediatric Medical/Surgical Unit. The hospital’s computers were also down, so that added another degree of complexity to everything.

I took the overnight shift with J.P., and we ended up in our room about 2 a.m. I spoke to a medical student who would be caring for him and was told that the chief resident would be coming by soon. I let the nurse and medical student know that we needed to get IV fluids started as soon as possible because of his diabetes insipidus. (J.P. can become dehydrated quickly when he’s not eating and frequently vomiting.)

I was exhausted at this point. J.P. had fallen asleep with the anti-nausea medications, and I settled in on the parent bed and hoped to hear from the chief resident soon. However, I closed my eyes and next thing I knew it was about 6 a.m. J.P. was still asleep, and there were no IV fluids running. I called the nurse and was told there was a delay in getting the appropriate fluids because of the computer downtime. I reiterated that J.P. has diabetes insipidus and can’t be off fluids for an extended period.

I contacted J.P.’s endocrinologist, who quickly called the attending doctor and was able to get the IV fluids ordered stat. J.P. had another vomiting episode and dropped his oxygen level to the point where he was rapid-responsed back to PICU, which was where we wanted him placed initially.

At this point, my stress level was through the roof, and I was beyond the point of exhaustion and couldn’t take much more. The news we would get in the coming days led to us to try to move his feeding tube to his intestines, but subsequent vomiting dislodged the tube.

My sister was closely following things from Missouri and had heard enough. She came to our rescue at the end of November, and we learned a few days later that J.P. was ready to go home. After all that had happened, there was an element of fear to going home. I felt I might lose my mind if he were to vomit again, but at least three of us would be ready in a worst-case scenario.

I tried to think positively. This is the Christmas season, right? The best gift ever would be to be able to put this behind us. We could get some decorations out for the holidays. Maybe my sister could help us decorate our tree. That would be a lot of fun, and I was definitely ready for something fun. But then it happened. It seemed to come from nowhere. J.P. was vomiting again, and my heart just sank.

Just like before, the respiratory issues followed the vomiting, and we were back on the phone with the 911 operators. The fire engine and ambulance were soon at our house, and before we knew it, we were back where we least wanted to be: the emergency room. The hopes that this nightmare was over were dashed. Christmas was again on hold, and our hearts were broken.

Two days later I wrote a post to Facebook that summed up my feelings.

“These have been among the roughest days as the dad of a child with special needs. The back and forth to the hospital, the vomiting, the difficulty to find a diagnosis, and the lack of treatment options have taken a toll. Throw in a few unexpected twists, and it’s been exhausting both mentally and physically for Paige Royalty Cousins and myself. I apologize for not updating sooner, but here’s what I can share: J.P. isn’t a kid anymore. He’s 16 years old, and it’s more difficult for his malformed brain to regulate everything with a bigger body. This means the motility of his digestive system is slowing, and it’s not likely to get any better in the future. We’re planning to try a formula that’s easier to digest and feed him at a bit of a higher rate for fewer hours each day to give his gut more time to rest. If that doesn’t work we may attempt placing another GJ-tube, but he’s not a great candidate for that. Long story short, none of our options are a permanent fix, things are likely to get worse over time, and we need to think long and hard about where to draw the line with interventions. It sucks, and there’s probably more vomit in our future. I will say on a brighter note that our core team is doing all they can to work together with the intensivists on the plan. The past 48 hours has seen all of J.P.’s docs racking their brains to figure this out, and I greatly appreciate their efforts, as well as my sister, Catherine Cousins Brandt, for extending her stay to help Paige and I through everything.”

Posted to Facebook on Dec. 5, 2018

This hospital stay left us with little patience. The doctors gave us little hope that they would be able to solve the problem. Some questioned why there was so much vomiting at home and repeatedly questioned us on whether we were part of the problem. It was decided that wasn’t the case once they talked to the medical professionals that know our family best.

We’ve repeatedly been told that kids with special needs usually have more problems in adult bodies. There is more that the brain, heart and lungs must manage, and they’re already working quite hard before all the growth is completed. That’s something I try to keep tucked away in the deep recesses of my mind and try not to think too much about because I can’t do anything about it.

We did make it home in time for Christmas, and while it was more low key than some, it was also special to really spend time simply appreciating the fact that we were home with close family and thankful that we didn’t have to add Christmas to the list of holidays where we’ve been inpatient.