Minor Respiratory Issue

Last summer we received some devastating news. The pediatrician that had been seeing James since he was a newborn told us that he was retiring at the end of the year. It really wasn’t a complete shock because he had mentioned it about a year prior, but when he gave us a retirement date, it hit pretty hard.

“What are we supposed to do now? We can’t possibly find a new pediatrician that would provide the same level of care for James that he has.”

He was the one person who knew James just as well as Stacy and I do. He was there from the very beginning of James’ life and was always a phone call or text message away, no matter what time of the day or night it was. I still remember the time many years ago when James was having some respiratory issues on a weekend and the doctor offered to look James over…if we were willing to drive to his house. Not kidding. It was 7 or 8 PM and we hopped in the car and drove 45 minutes to the pediatrician’s house. How many doctors offer to see their patients outside of office hours at their house?

That’s just the kind of doctor he was. I don’t know if he did the same for all of his other patients, or if James was just special…no pun intended. He really went above and beyond for James. Over the years he became more than just James’ doctor. He became family. And like family, he couldn’t just be replaced. But we had to do something.

Stacy had a few conversations with the pediatrician and made some phone calls. We decided to go a slightly different route and not go with another pediatrician. Instead, James is now under the care of a Pediatric Nurse Practitioner (PNP). She worked for James’ pediatrician a few years ago, was recommended by him, and the practice she works for is less than 10 minutes away.

Other than taking James to see her for an “interview” to see if she was up for the challenge of being James’ primary care provider about six months ago, we haven’t had a reason to take Jame to see her. That changed about a month ago.

James had been doing really well health-wise without any major respiratory issues for quite a while. But as we all know with James, sometimes he just likes to spice things up. In the early morning hours of Tuesday, February 20th, he decided to drop his sats into the 50s and kick his heart rate up into the 150s. Stacy got up, worked her magic, and got him to stabilize. When she got him up a few hours later to start his day, it was as if nothing happened, so she went through the normal routine…changed his diaper, got him dressed, and gave him a percussion vest treatment, breakfast, meds, and a dual nebulizer treatment before sending him off to school. For the most part he had a good day, but his one-on-one nurse heard a little something in his respiratory system and let Stacy know late that morning. She didn’t think it was serious enough to have him picked up from school, so Stacy waited until he got home, put him in the car and took him to see his new pediatric nurse practitioner. She looked him over, ran some viral swabs, which all came back negative, and started him on a 5-day round of antibiotics just in case something was starting. Pretty much everything our former pediatrician would have done. He’s been fine ever since. James just likes to keep us on our toes.

 

 

Oral Surgery Update

In other medical news, we had an appointment at the UIC Craniofacial Center to discuss what they had in mind to give James more room in his mouth for his tongue. You may want to read (or re-read) the Medical News section of the Medical News, School and Thanksgiving post that I wrote in December before reading this update.

As we were waiting for the doctors to come into the room, I couldn’t help but notice the artwork on the wall:

 

 

As someone with OCD, that really bothered me. How does someone put this up and then say, “that looks good”? I know that I couldn’t get the tiles to line up perfectly, but I’d at least redo that bottom row so that they were better lined up with the top row.

When the doctors came in and laid out their plans for the surgery, the misaligned artwork quickly became the least of my worries. What they proposed sounded pretty crazy and more invasive than we thought would be necessary: some shaving of the tissue on the upper palate; removing a few teeth; cutting the lower mandible (jawbone) down the middle; and inserting a custom-made expander on the lower jaw that we would need to crank every so often to widen the jaw. That was just the preliminary plan. They wouldn’t know if anything else would need to be done until they got in there. And there would be the potential for needing an emergency tracheostomy during surgery.

The surgery itself wouldn’t take all that long, but we would need to plan for a week or two in the hospital after the surgery. Wow! That was a lot for us to take in. What we thought would be a relatively simple procedure to widen James’ lower jaw to make more room for his tongue and hopefully improve his respiratory function has become a bit more complicated than we thought.

On our way home from the appointment we sat in silence for what felt like half an hour. In reality, it was probably closer to ten minutes. We were both replaying the conversation we just had with the doctors and trying to process everything that was said. Then we started talking about each other’s thoughts and feelings about the procedure and if we wanted to put James through it.

We always put James’ needs first, but at the same time, we do have other family members that we need to think about. We discussed the “what if James is in the hospital for weeks, or a month, recovering from this surgery” scenario. Stacy would be by his side day and night like she always is when he is in the hospital. It would be a bit different this time, though. It’s at a hospital that we’ve never been to, and one that doesn’t know James at all, not to mention that it’s about an hour away from home. I would take off work for a few days, maybe a week after the surgery, but if James is in the hospital longer than that, I would need to go back to work, and probably have to work a modified schedule so I could take care of Maggie. She is very territorial of her house and doesn’t like anyone in it besides her family. Having someone stop by to put her out to go potty and feed her might not be the best idea. And we don’t think she would enjoy being at doggy daycare all day. She is an old girl and was never into playing much.

Our conversation turned to the “T word” that the doctors mentioned at the appointment. Tracheostomy. We’ve avoided putting a trach in James for fourteen years. Do we want to put him in a situation where it may be required? The doctors sent us home with paperwork with the description of the proposed procedure to get each of James’ doctors to sign off on, including his ENT and pulmonologist, which are the two doctors that would probably be best to discuss the whole trach thing with.

James already has a routine checkup scheduled with the ENT for May 31st, so Stacy plans to just wait until that appointment to discuss the procedure with him. James didn’t have anything scheduled with the pulmonologist, but he was able to squeeze us in about a week after our appointment with the craniofacial doctors. That was a rough conversation. He was blunt and told us that we should have the trach in place before they even start the oral surgery. He told us that he’s had patients die on the table because their airway became compromised during a procedure, and they couldn’t get a trach in in time.

It’s been three weeks since our talk with the pulmonologist and we still haven’t decided if we want to move forward with the oral surgery or not. James has been through a lot of surgeries, and I don’t think we’ve struggled as much with any of them as we have with this one. We just need more time to weigh the pros and cons, decide whether the benefits outweigh the risks, and figure out what’s best for James.

 

 

School

This is turning into a much longer post than I anticipated. If you’ve read everything I’ve written so far, thank you. I still have more to share, though. I promise the rest of this post should be less wordy and more picturey. Yeah, I know that picturey isn’t a real word, but it should be. If something has lots of words, we call it wordy. So, if something has a lot of pictures, why isn’t it called picturey? It sounds logical, doesn’t it?

Anyway, let me take a few minutes to talk about James’ past month at school. In late February, they took a field trip to Gerry’s Café. I’ve read a few articles over the past couple of years about businesses that focus on hiring those with disabilities and thought it was really cool. I never realized that we had such an establishment close to us.

 

 

As you can see on the wall behind James:

“Our mission is to operate a community destination café, offering craft food and beverages, prepared and served by employees, twenty-two and older, with intellectual and developmental disabilities.”

We know that James will never be able to get a job when he gets older, but there are a few kids in his class that have enough mental, intellectual, and physical ability to work, and they should have the opportunity to do so. According to Gerry’s website, 80% of adults with disabilities are unemployed. That’s a pretty sad statistic. Those with disabilities deserve opportunities like everyone else. The world needs more places like Gerry’s Café.

On March 1st, James brought home a candle he made in class to support Finley Grace. If you are interested in purchasing some candles or soap to help out this cute little girl, check out their website.

 

 

The week of March 4th was one of those themed weeks where every day that week you were supposed to wear something based on the theme for the day. Since it was also Multicultural Week, on Monday they were supposed to wear an item with a flag that represents their culture. James has some Armenian in him from Stacy’s side of the family, he wore Stacy’s Armenia shirt.

 

 

Tuesday was jersey day, and since none of us have any sports jerseys, he didn’t have one to wear to school.

Wednesday was School Spirit Day, and he wore his high school shirt, but Stacy forgot to snap a picture.

Thursday was Decade Day, and he wore the “Disco King” shirt that Stacy made for him a couple of years ago. Do kids these days even know what disco was?

 

 

On Friday James’ classmates and teachers wore their 3E Love shirts as a tribute to Steve Hopkins, who passed away in January.

 

 

3E Love was a company founded in 2007 by siblings Annie and Stevie Hopkins, who didn’t let their disabilities stop them from doing something amazing. Annie created the wheelchair heart symbol for a t-shirt in 2004 when she was an undergraduate student at the University of Illinois. That symbol became the trademark and driving force behind 3E Love, with the 3 Es being Embrace, Educate, and Empower. Embrace diversity, educate our communities, and empower one another.

Their small Chicago area t-shirt company quickly became known by disability communities around the world. Their message was simple: to love life and live life to the fullest no matter what you can or cannot do. After Annie passed away in 2009, Stevie carried on her legacy and continued to run the company. After his passing, we questioned what would happen to 3E Love. Unfortunately, it looks like it will be ceasing operations, leaving a void that can never be refilled.

Annie and Stevie, thank you for your contribution to the disability community. You did something amazing during your short time on this Earth, and you will forever hold a place in our hearts.

Getting back to James, on the 14th, he, his classmates, teachers, and aides, showed their support for St. Baldrick’s, a foundation whose mission is to cure childhood cancer. Although it is customary to shave your head to show support for St. Baldrick’s and the kids who have lost their hair during cancer treatments, James and his classmates did not do so. Maybe James will next year. Maybe we all should.

 

 

 

New Shirts

I am almost done with this long post, I promise. Just a couple more pictures. The first one is a plug for JoJo’s Creations that Stacy came across a few years ago. They design and sell t-shirts to raise money for medical bills and equipment for their son with special needs. Check them out on Facebook and Instagram.

 

 

Last week we received this year’s pediatric stroke awareness shirts with James’ name on it.

 

 

And I am done! Thanks for sticking around to the end. Maybe next time I have a post this long, I’ll split it into two separate posts.