The J.P. Story: Problems with pain

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 12th chapter looks at the challenges we’ve faced with cluster headaches and hospitalizations. To start at the beginning of the story, click here.

Having a teenager who can’t talk comes with many challenges, but one of the most frustrating is when they can’t tell you what hurts when they’re sick. With many different diagnoses to manage, it can be difficult to know what doctor to contact when issues arise, and many of the symptoms of all of J.P.’s illnesses can be pain and nausea.

J.P. began vomiting in October, and we weren’t sure if it was because of cluster headaches, gastrointestinal issues or a shunt malfunction. I’m not talking about the kind of vomiting when you feel better after it happens. This was vomiting that wouldn’t cease, and eventually led to respiratory distress and a 911 call.

Again, J.P. can’t tell us what he’s feeling, so we rushed him to the hospital by ambulance. He was admitted, and we began our search for answers. He continued to vomit in the emergency room, and he was close to being intubated because of the low oxygen level.

We were sent to the PICU. Multiple tests were ordered, and consults were placed for gastroenterology, endocrinology, neurology and neurosurgery to rule out a shunt malfunction. There were so many questions: Does he feel sick to his stomach, or is the nausea more because he’s light-headed or dizzy? Is he having a cluster headache? No answers seemed to come easy, but a decision was made to check his shunt, which ended up being OK.

We spent several days working to get feeds established, and as we were preparing for discharge, we learned his sodium level was too high. At the same time, his IV infiltrated, which would be key to bringing down his sodium level. Things improved from there, and we were discharged two days later.

We were home for about two weeks, before a follow-up appointment with J.P.’s endocrinologist that ended with breathing problems and another ambulance ride to the hospital. During this admission, there was a noticeable change in the way things were communicated with us regarding the long-term implications to our son’s life.

It felt like the providers were ready to just write everything off to J.P.’s underlying diagnoses, but Paige and I weren’t ready to throw in the towel. Some of the doctors who know him best weren’t around, but the others who were did offer support and ideas to try to get J.P. eating again.

We were desperate to find hope. Hearing some of the common things people would say didn’t help. Things like, “God won’t give you more than you can handle,” just irritated me. I read a Facebook post from Lysa TerKeurst that states it wasn’t even something God said.

God does say He won’t allow us to be tempted beyond what we can bear and that He always provides a way out. (1 Corinthians 10:13) But that’s not the same as God not giving us more than we can handle … The world is filled with people who are dealt more than they can handle. And, surprisingly, so is the Bible.

The Apostle Paul wrote: “We do not want you to be uninformed, brothers and sisters, about the troubles we experienced in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired of life itself. Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead” (2 Corinthians 1:8-9, NIV).

What incredible hope for our hearts. God doesn’t expect us to handle this. He wants us to hand this over to Him.

Lysa TerKeurst

During these vomiting episodes, J.P. would begin to sound very junky. With the impact that was having on his oxygen level, we figured out that placing him on his stomach would quickly improve his oxygen saturation level. On several occasions it has allowed us to avoid intubation. Some of our nurses and respiratory therapists were amazed at the difference it would make. One of our doctors even put in an order that we flip him three times a day.

AdventHealth has a STAR Program for children with special needs. They’ve invested in having special toys and activities available to make the inpatient experience more pleasant. We started to bring some of those toys into the room for J.P. while he was on his belly, and he loved looking at the lights (pictured, above).

J.P. was able to go home two days later. We were ready for a break, but after just eight hours we were in the Children’s Emergency Center again with the same symptoms and few answers. We were desperate for help.

Continue to Chapter 13: Hospital Holidays