Respiratory Issues

James has been having some respiratory issues for the past couple of weeks. He normally gets sick around Thanksgiving, so this is not totally abnormal for him. As bad as it sounds, we almost expect him to get sick this time of year. It does seem a bit different this time, though. We just can’t figure out what it is.  He’s been needing a little boost of oxygen to keep his sats up during the day, but something happens during the night. No matter what we do, or how much oxygen we give him, he can’t seem to get his sats up.

The palliative nurse stopped by last Monday to listen to his lungs, and she said that he wasn’t moving air like he should be. We would normally take him to the hospital for a chest x-ray to check for pneumonia, but with the covid numbers going up like crazy, we’re trying to avoid the hospital unless absolutely necessary. After some discussions between the nurse, our pulmonologist, and our pediatrician, we put a plan in place to do nebulizer treatments every two to three hours, and percussion vest treatments a few times throughout the day.

The nurse stopped by the following day to take another listen to his lungs, and it sounded like he was moving air better. We thought we were on the right path, but he had another horrible night. He kept desatting and just couldn’t keep his numbers up.

We’ve all been racking our brains trying to figure out what this could be. The symptoms aren’t the typical ones we see when he has pneumonia, so we’ve pretty much ruled that out. Has anything changed around the time he started having the breathing issues? Well, because of the rapidly increasing coronavirus infections in our area, James switched from a hybrid school schedule to fully remote about three weeks before he started getting sick. And it’s been about six weeks since we got Maggie. Crap! Could this be an allergy to Maggie?! Please tell us he is not allergic to the dog!

We took James to the hospital this past Saturday to get some blood work to test for allergies and some other things. Maggie wanted to go, too.

Maggie and I stayed in the car while Stacy took James in to draw blood. We got bored waiting for them to come back. Anybody else thinks she looks like Chester Cheetah?

We’re still waiting on the results from the blood test. We should have it back sometime this week. I really hope he is not allergic to the dog. I don’t know what we would do. She’s a part of our family now. We can’t just get rid of her. That’s not right. I can’t think about that. Let’s wait until the blood work comes back and see what it says.

Maggie Heartworm Update

I know this blog is supposed to be about James and his medical issues and struggles, but now that we have a second child with her own medical issues, I thought I would include them here. We adopted Maggie in mid-October knowing that she had heartworms and that the rescue was going to pay for the treatment to kill them. In early November she had her first injection of the heartworm treatment, spent the night at the vet, and came home the following morning.

The heartworm treatment is a series of three shots, and the original plan was to space them each one month apart. She was supposed to get the second dose in early December, and the final dose in early January. The vet thought that she handled the first dose well enough that she wanted to give Maggie the second and third doses at the same time. Last week she got those two doses, and they really took a lot out of her. She slowly getting back to her normal self, but as long as these heartworms are gone, it will all be worth it.

While Maggie was at the vet last week, she got to meet the Grinch. I didn’t realize it until I saw the picture, but Maggie looks like Max from “How the Grinch Stole Christmas” movie with Jim Carrey.

School

Because of a surge in COVID-19 cases in our area, the school district decided to move from the hybrid schedule to a fully virtual schedule on Monday, November 9th. It was good that James was able to go to school a couple of days a week and get the therapies that he needs, but now he’s losing out on those again. I know that the district is doing what’s best for the health of all students, but it just sucks for the kids that need the therapies or extra help that the schools offer. James and Stacy have been having virtual sessions with the school physical therapist with Stacy playing the role of the therapist, but it’s just not the same. I’m not saying anything bad about Stacy. She is doing the best that she can, but she is not a trained physical therapist.

I have been wondering if him going back to completely virtual has anything to do with the respiratory issues he’s been having lately. I remember James was having issues back in the spring when everything shutdown and he finished the school year remote at home. Stacy thought it may have been because he wasn’t moving around at home like he was when he was in school. She had thought that maybe just getting him in his stander every so often would help, just by getting him in a different position. The vice principal was kind enough to go to school and bring James’ stander to our house. When school went hybrid this year, we didn’t send the stander back and still have it, so Stacy has been using it with James every so often. We’re not sure if it is helping or not.

They normally do school photos in late September, but with school being hybrid, it was too difficult to coordinate when all of the kids could get their pictures taken so they opted to cancel them this year. We couldn’t let James not have a school photo. Would we just have an empty spot on his wall of school photos? We had our annual family photo session in late October, so we had the photographer take a picture of him for his “school photo”. It’s the picture on the bottom right.

Thanksgiving

Every Thanksgiving I take a moment to reflect on the past year and think about what I am thankful for. Usually it’s James’ health, or our awesome family, friends, and Fans of James. We’ve received so much support (emotionally and financially) over the years that we feel truly blessed. We can’t thank you all enough for all of it.

This year is a bit different, however. As I started to think about what I am thankful for this year, I think the Covid-19 pandemic has brought a lot of things into focus. One thing this pandemic has taught me is how much I take for granted. Let’s take freedom for example. It’s something that I never really thought twice about. To a certain extent, I have always been able to go wherever I wanted and do whatever I pleased. That all changed this year with the lockdowns and mask wearing mandates.

I would like you all to think about something for a minute. How much did you value your freedoms until they were taken away? As the saying goes, “you don’t know what you got until it’s gone”. Someday this pandemic will be over, the lockdowns will end, and we will no longer be forced to wear masks. Will our freedoms have more value then?

Although we were unable to see our families this Thanksgiving, I am thankful that Stacy, James and I were together at home. Some weren’t so lucky. Not just this Thanksgiving, but past Thanksgivings as well. Before the pandemic. I am talking about the men and women in our military who are away from home (either within the borders of the United States, or in some foreign country) who are out there protecting the freedoms that we sometimes take for granted. I am talking about the men and women of law enforcement who didn’t see their families on Thanksgiving because they were out keeping our streets safe. And let’s not forget about the doctors, nurses, and EMTs who have been working days, nights, weekends, and holidays battling coronavirus. Please take a moment to say a word of thanks (and maybe a prayer) for all of them.

I’ll end this post with a thank you to Nestle Health Science for the beautiful flowers and note they sent us for Thanksgiving.

In case you can’t read the card, it says:

“For 2020, we are thankful for you sharing your stories with us and that our products are helping you to live your fullest lives. Our hope for you is to stay happy and healthy”

~ Nestle Health Science

If you missed it, we were interviewed by Nestle a few months ago about our experience with James and the formula he uses. I discussed the interview and provided a link to the video of the interview at the bottom of this post.