Pneumonia

For the first several years of his life, James would usually come down with pneumonia around Thanksgiving. It was such a normal occurrence that Stacy started calling November Pneumo-ember. A little play on words, combining pneumonia and November. I don’t know what changed, but for the past few years, he’s been fine throughout November, but instead came down with pneumonia at other times of the year. Now that I say that, just watch him get pneumonia this November.

Looking back at our medical notes, 2018 was the last time he had pneumonia in November. In 2019, he got it in April, and again in August. In 2020, it was August again. Last year it was July and again in August. And this year it was August again.

I am going to put a little asterisk here. For those of you who are regular readers of this blog, you may recall that James had “pneumonia” in early November last year. I am not counting that one, because palliative care suspected that he had pneumonia, but we did not take him to the hospital for an x-ray, so it wasn’t confirmed. We treated it at home with antibiotics and a steroid and it didn’t require a hospitalization. 

Now that that’s cleared up, did you catch what I said in the last sentence of the second paragraph? James had pneumonia at the beginning of this month. It used to be a winter thing for him, but somehow changed to summer. The weather has been normal for this time of year, we didn’t have any freak cold snaps that would have been a shock to his system, so we have no idea what caused the pneumonia. I mean, we do know what causes his pneumonia. Because he can’t suck or swallow to clear his secretions, he sometimes aspirates those secretions into his lungs, which is what brings on the pneumonia. Really, it can happen at any time of the year. It’s just weird that it used to happen so frequently during the colder months, but now it’s happening in the warmer summer months.

Now that I’m looking at the second paragraph again, I realized something. The last time he had pneumonia in November was in 2018. He had his full spinal fusion in May of 2019. In the three years since his spinal fusion, he’s had pneumonia in either July or August, and nothing during any winter months. Is that just a coincidence, or is the spinal fusion the thing that altered when he gets pneumonia? Sounds weird, doesn’t it?

Like all of the other pneumonias, this one came seemingly out of nowhere. He was having some respiratory issues on the night of the 2nd so Stacy put him to bed with some oxygen hoping that he just needed that little boost of 02 to get through the night and he’d be better in the morning. Well, the following morning he still needed oxygen to keep his sats up. Stacy put a call into the pulmonologist who sent over prescriptions for an antibiotic and a steroid, which are the go-to drugs for pneumonia.

Unfortunately, we felt like we couldn’t wait for the drugs to start doing their thing. James seemed to be getting progressively worse, so we ended up taking him to the ER. They did their usual assessment and then started the tests: chest x-ray, bloodwork, viral panel, and a urine analysis.

It wasn’t much of a shock that the x-ray showed pneumonia. Bloodwork showed elevated white blood cell (WBC) count, which is an indicator of an infection; slightly above normal red blood cell count; slightly above normal hemoglobin; and high glucose level. Because of the pneumonia, they started working on the process of prepping a room for him because they were going to admit him. They gave him a dose of an antibiotic in the ER while we waited for his room to be ready.

Then something weird happened. We waited maybe an hour until they came down to transport him up to his room. We were in the process of transferring him from the ER bed that they took him up on to the bed in the room, and we noticed hives and a rash on part of his face and on a few other parts of his upper body. We brainstormed with the nurses about what it was and what may have caused it. The only thing we could come up with is that it may have been an allergic reaction from the antibiotic they gave him in the ER, which we thought was weird because he had been on that antibiotic several times without an issue. They gave him the same antibiotic the following day and no reaction, so maybe it wasn’t the antibiotic that caused the hives and rash after all. Weird.

That was a Wednesday, and he was already showing signs he was feeling better on Thursday.

I don’t know what it is about the hospital, but somehow he gets better quicker when he’s there. What are they doing differently than we do at home? He gets antibiotics, which we can do at home. He gets nebulizer treatments, which we can also do at home. Is there something else that they’re doing that we’re not? Stacy often complains about a sore throat when she spends the night at the hospital with James because the air is so dry. Maybe that has something to do with it.

Or maybe it was his new friends that cheered him up and made him feel better so quickly. Child life dropped off a little stuffed dinosaur for him. We named him Spike.

A couple of hours later he won a game of BINGO and received a large stuffed horse as a prize. Say hello to Patches:

He was doing well enough by Thursday afternoon that they didn’t think he had to spend another night, so he was free to go home. Of course, it always takes a couple of hours between when they say he can go home and when he can actually leave. Discharge paperwork said to keep up with the nebulizer treatments and to take the antibiotic that the pulmonologist prescribed right before we brought him to the ER.

Monarch Butterfly Release

The week before his stay at the hospital, Stacy took him to our park district’s nature center to watch them release Monarch butterflies into the wild. He learned about their life cycle, from egg, to caterpillar, to chrysalis, to beautiful butterfly.

A few years ago, I put together a butterfly garden in our front yard to do my part in saving the Monarch butterfly. The first couple of years it did well. We witnessed several Monarchs go from eggs to caterpillars to chrysalis, and watched as they came out as butterflies. It was really cool to watch the process. And pretty amazing. Unfortunately, these past few years have not been so good. We’ve had wasps move in and they have been killing the caterpillars. I found one nest and got rid of it, but there must be another one around somewhere because I keep seeing them flying around the garden, hunting for the caterpillars. I’m still trying to get rid of them so someday we can get back to raising Monarchs.

Back to School

Eighth grade. His last year in elementary school. A year from now he will be in high school. I can’t even grasp that. It’s crazy to think about. How did a kid with this many medical issues and challenges make it this far? Many of you will probably say it’s because he has awesome parents. We can’t take all the credit. He has had some awesome teachers, therapists, nurses, and doctors that deserve a lot of credit, too. We wouldn’t have made it this far without them.

Birthday Sneak Peak

If you’ve been following James for a while, you know that we have a theme for each of James’ birthdays. This year Stacy decided to go with a Teenage Mutant Ninja Turtles theme, because James will be turning 13. Yep, he’s going to be a teenager! I said it in the previous paragraph, and I’ll say it again. We never thought he would make it this far.

Stacy has been doing a birthday countdown on his Facebook page, where she’s been posting pictures from his previous birthdays. I’ll make a collection of those pictures and try to post them here on Saturday, the 27th. His birthday party is on the 28th, so look for the party pictures to be posted on the 29th or 30th.