What is James Fighting?

What is James Fighting?

We think that James is still fighting something, we just don’t know what. He seemed to be doing fine last week on Monday and Tuesday, but on Wednesday afternoon Stacy got a call from the school that James wasn’t doing well, and she went to pick him up. The nurse at school was concerned about his high heart rate. His sats were normal even though he had been a bit congested, so we didn’t think it was anything serious. We just couldn’t figure out what was causing his high heart rate.

His heart rate came back down a bit later in the day on Wednesday, but he woke up Thursday morning with it being high again, so we kept him home from school. Stacy had an appointment to take the van to Mobility Works for a routine checkup Thursday morning, so we had to figure out some logistics. Does she cancel and reschedule the appointment? Do I take the van, drop it off, and go to work, which is a little bit down the road, and then pick it up after work? That probably wouldn’t have been the best idea in case James took a major turn and Stacy needed to take him to the hospital. I ended going into work late and stayed home with James while Stacy took the van to get checked out. By the time she got home, James was back to normal. I wanted to take the credit for his turnaround, but Stacy thinks he may have just been dehydrated and getting some food and fluids are what really helped bring his heart rate down.

Friday, Saturday and Sunday he seemed fine. We were planning on sending him back to school on Monday morning, but James had other plans. He woke up Monday morning with a high heart rate again!

 

A medical pulse‑oximeter sits on a wooden table, its digital display showing a red “93” above a green “169”. Indicator lights and control buttons line the front of the device. Furniture is visible in the softly lit background, giving the scene a home‑monitoring feel.
Sats: 93 (good); Heart rate: 169 (bad!)

 

His heart rate is the green number in the above picture. The red number is his “sats” or the level of oxygen in his blood, which shows that his lungs are good. So, if it wasn’t a respiratory problem causing his high heart rate, then what was it?

We were able to get in to see the pediatrician Monday morning, but he had no idea either. Everything checked out fine. He decided to put James on another round of antibiotics because something was causing his elevated heart rate.

Normally James has an elevated heart rate when is having respiratory issues. The fact that is sats have been normal with the high heartrate had us all stumped. The only other thing we could think of was something gastrointestinal (GI) because of the digestion issues he had several weeks ago. He’s back to his normal feeds, though. We took him to see the GI doc on Thursday to see if she had any ideas, but she didn’t. She did recommend that we increase his calories a bit because of his size. He was “eating” Peptamen Jr. 1, which is 1 calorie per milliliter; she recommended Peptamen Jr. 1.5, which is 1.5 calories per milliliter.

 

School

James was well enough to go to school for a couple of days this week, so he was able to partake in some of the “wacky outfit” days. Wednesday it was pajama day.

 

A three‑photo collage shows James lying on a cushioned surface, wearing pajamas with a colorful animal pattern. In each photo, he appears relaxed, resting or mid‑yawn, with carpet visible in the background. On the right side of the collage, orange text reads, “Pajama day at school for my little monster,” adding a playful caption to the scene.
Pajama Day at school

 

Thursday, he took the day off to go to the GI doctor, but he went to school on Friday for mismatch day. He wore his Superman pants for Jude, who passed away last weekend and I wrote about yesterday.

 

James lies on a bed covered with a colorful checkered blanket. He wears a green‑and‑white striped shirt and dark pants with a red Superman logo on one leg. His head rests on a patterned pillow, and his mouth is open as he sleeps or rests. A wooden headboard frames the bed, and a few small items, including a toy and a bottle, sit on a nearby surface.
Mismatch Day at school. He’s wearing his Superman sweatpants for Jude.

 

Odds N Ends

In every rough situation, you have two choices. You can be all pissed off about it, or you can try to make the best of it. Raising a kid like James is hard, but we try to have fun with it when we can. Stacy found this decal for the van from BayouCajunCreations on Etsy:

 

A blue decal on a minivan window shows a wheelchair‑accessibility symbol beside a stylized mustache graphic. Below the icons, the text reads, “I [mustache graphic] you to leave room for access,” using the mustache as a visual pun. The design delivers a polite, humorous reminder about leaving space for accessibility.
“I mustache you to leave room for access”

“I mustache you to leave room for access.” The decal is on the door with the ramp to politely remind people to leave enough room for us to get the ramp out so that James can get in and out.

After we dropped James off for school on Wednesday for pajama day, Stacy and I went to take a tour of the Marklund Children’s Home. As much as Stacy and I hate the thought of not being there for James, one of our biggest fears is that we will be killed in a car accident on one of our date nights while James is at home with a babysitter. We have actually thought about driving separately so in the event there was a horrific accident, only one of us would be killed. We were very pleased with the Marklund facility and the staff. So much so that we put James on a waiting list. Unfortunately, they only have a certain number of beds, and they are currently at capacity. If a bed becomes available, they will start to go through the waiting list until they find someone that will take the bed. Hopefully James will never have to be without us, but we just want to make sure he has somewhere to go if that time ever comes.

Last night we took a family trip to go grocery shopping. James was having so much fun that he fell asleep.

 

Stacy, James, and Jeff lean in close for a selfie inside a store. James sits in a stroller wearing a red hoodie and a patterned neck pillow, while Stacy and Jeff smile from either side. Store shelves filled with products form the background, giving the moment a casual, everyday feel of being out together.
James wasn’t too excited about grocery shopping