Health Scare

Having a medically complicated child like James is a balancing act. You want to do what’s best for them health wise and try to keep them away from any illnesses that are going around. At the same time, you don’t want to keep them in a bubble. You want them to go to school so that that they can be around their peers, go to places like the zoo to stimulate their minds, and go on vacations so they can see new sights and experience new things. Then you come across something that kind of freaks you out.

A couple of weeks ago there was a news story on NBC 5 Chicago talking about some “superbug” that is resistant to antibiotics and that Chicago seems to be ground zero with the largest outbreak in the country. Dr. Bleasdale, the Medical Director of Infection Control at the University of Illinois at Chicago is quoted as saying, “We need to be very, very careful about when we use antibiotics because that’s what leads to more resistance. It’s that antibiotics use over years that has led to the problem we have right now.” This is something we have discussed with James’ pediatrician in the past. James has been on antibiotics more times than we can count. Do we need to worry about them becoming less effective, or not work at all, because he is on them so often? The pediatrician is worried about this as well and rotates through a few different antibiotics so that he is not on the same antibiotic twice in a row. Now I am starting to worry if that is enough. Will we reach a point where none of the antibiotics work for James? Hopefully not.

Two days after that story aired, James was sent home from school with an increase in secretions, congestion and needing oxygen to keep his numbers up. After Stacy got him home, she gave him a percussion vest treatment, nebs and some good suctioning and was able to get his numbers back up a bit. She realized that he hadn’t had any seizures that day, which is a telltale sign that James is sick.

Stacy put a call into palliative care and one of James’ regular nurses dropped by to assess him. His right lung sounded fine and was moving air, but his left sounded very diminished. He also started a low-grade fever. The usual signs of pneumonia, which usually means a trip to the ER for an x-ray to confirm, and a round of antibiotics The nurse put a call into a doctor at palliative care, and we were expecting her to tell us to head to the ER for an x-ray. But she didn’t, not yet anyway. Instead, she wanted us to keep up with the percussion vest treatments, nebulizer treatments, and she called in a prescription for a high blood pressure transdermal patch that can also be used to help with secretions.

We normally start James on any new medications on a weekend when we’re both home and can monitor him, so Stacy put the first patch on last Sunday morning at around 6 am. By early afternoon, he was very dry and lethargic. It did reduce the secretions like the doctor wanted, but the sleepiness was a bit of a concern. By 6 pm his heartrate dropped into the low 60s, which is very low for him. His oxygen levels were in the low 80s on 2 liters of oxygen, which also wasn’t good. We decided to take the patch off and were preparing to take him to the hospital. As we were getting things ready to go, his numbers slowly started coming back up, so we decided to wait and see.

We put him to bed early but remained ready to go if his numbers started going the wrong way. Fortunately, he slept through the night just fine. He woke up Monday morning with really good numbers. He was still a bit gunky, but otherwise he seemed almost back to normal.

That was one of those situations where I am glad there are two of us. It was a bit scary there for a little bit, I won’t lie, but I’m glad Stacy and I are in this together and we’re not doing this alone.

I do have to say that James is a pretty resilient kid. With everything life has thrown at him, he always seems to bounce back and keep on going. Sometimes it takes him a bit longer than we would like for him to recover, but other times, like this recent episode, he seems to just pop right back as if it never happened.

Other Medical News

On Wednesday James had an appointment with his neurologist. We debated if we wanted to go to the appointment after the health scare we had over the weekend. Since James had been fine for the previous couple of days, we decided to go. The neuro increased the levels on his VNS and increased the dosages on two of his seizure meds. She also talked to us about the ketogenic diet (which James had already tried), and an upcoming drug study that she thinks James might be a candidate for. We’ll find out more about the study as it gets closer. On the way out of the appointment, I picked up a couple of brochures to read:

Stacy rolled her eyes at the puberty one, but she should be ready for “the change” that’s going to happen sooner or later, right? James may not be a typical boy, but I’m pretty sure that he’s still going to go through puberty.

When we took James to see a spinal doctor in April to talk about his scoliosis, the doctor wanted James to try a TLSO (thoracic lumbar support orthotics) for a bit to see if it would straighten up his spine. If the TLSO didn’t work, then we would start talking about spinal surgery. Shortly after that appointment James got fitted for a new TLSO and he picked it up on Friday.

A TLSO is basically a two-piece shell that fits around the torso; Stacy refers to it as a turtle shell. We need to figure out how to use it with his feedings. It does have a hole in it where his g-tube is, so I suppose we could keep it on while he feeds. But if it is on too tight, will it be uncomfortable during his feedings as his stomach fills with food? Should we loosen it up during feedings? Should we take the front half off during a feed and put it back on somewhat loose afterwards?

Mother’s Day

Because of James’ short illness that I talked about at the beginning of this post happened on Mother’s Day weekend, we stayed home and didn’t spend Mother’s Day with Stacy’s family like we normally do. While we let James rest and recover from his ordeal, Stacy and I finished off some electrical work for the string lights that Stacy’s parents bought us for the pergola.

It’s going to be so nice to be able to grill at night and actually see what I’m grilling. We will also be able to enjoy dinners outside on those cool summer nights.

James came home from school on the Tuesday before Mother’s Day with this, so I’m not sure if it is supposed to be a Mother’s Day gift or not:

Stacy thinks it’s a little bit disturbing. Maybe she’s just jealous of all of his hair!

On Friday he came home from school with a mug and a card that he made at Hugs & Mugs and Gigi’s Playhouse. These look more like Mother’s Day gifts.

I picked up some chocolate covered fruit from Edible Arrangements to let her know that I appreciate all that she does. She even treated herself to a pedicure on Monday while James was in school.

School

Not much to report about school. Everything seems to be going well. He made the “hair plant” and the mug that you saw earlier. He also made a book:

We prefer James in the Green Zone.