Pneumonia

I think maybe I jinxed it. Or maybe it is just James being James and throwing us one of his curveballs when we weren’t expecting it. In a post that I made in August, post I mentioned that James getting pneumonia in November used to be a regular occurrence. That was until he had his spinal fusion in 2019. Then something changed. He stopped getting pneumonia in November but started getting it during the warmer months instead. I know it sounds weird, but in the three years following the spinal fusion (2019, 2020, and 2021) he did not get pneumonia in November.

That streak came to an end this year. Well, kind of. He didn’t actually get pneumonia in November, but it was close enough. On October 25th, Stacy got a call from the school nurse that James wasn’t doing well…high heart rate and low oxygen saturation. Those are James’ telltale signs that he’s sick.

Stacy called palliative care and asked for a nurse to stop by for an assessment. You may remember that we were discharged from palliative care in April because “his condition and symptoms are no longer requiring management by the Palliative Care team.” In other words, he was doing so well that they felt he no longer required palliative care. That discharge was short-lived. When James was hospitalized in August, Stacy called palliative care to inform them and to see if we could get reinstated, which we did.

When the nurse came by to check him out, she noted that his left lung sounded a bit diminished. They wanted to start him right away on a steroid and an antibiotic because it was more than likely pneumonia. He had a rough night, so we decided to take him the ER for a chest x-ray to confirm it was pneumonia just to make sure we were treating it the right way.

The x-ray confirmed pneumonia, just like the nurse suspected. Other tests they ran showed that he also had rhinovirus, which is the most common cause of the common cold. Before taking James to the ER, we knew there was a risk that the ER doctor would see the pneumonia on the x-ray and want to admit him. We pleaded our case, informed him that we had palliative care at home, and the doc was comfortable enough with that to send us home. The only thing he wanted to do before sending us on our way was to give James a shot of an antibiotic.

In the x-ray above, you can clearly see the VNS in his chest (on the right side of the picture). If you look closely, you can faintly see the wire that runs from the VNS up to his neck where it wraps around the vagus nerve. You can also see the “railroad tracks” up his spine. That is the spinal fusion.

Shortly after we got home from the hospital, James turned bright red with some purple splotches, his saturations tanked, his heart rate shot up, and he had a golf ball sized bump on the back of his head. Something similar happened when James was in the ER in August. An x-ray showed pneumonia and he was admitted to the hospital. Just before they transferred him from the ER to his hospital room, they gave him an antibiotic. Shortly after we got to his room, he broke out in a rash and had a bump on the back of his head. We thought it may have been the antibiotic but weren’t totally sure. They gave him the same antibiotic the next day and he was totally fine, so we thought maybe it wasn’t the antibiotic after all.

Now that he’s had a similar reaction to the same antibiotic, we are almost convinced that he has developed some sort of allergy to it. It’s weird because he has been on this antibiotic several times over the past 13 years and hasn’t had a reaction to it until recently. I am not going to mention the name of the antibiotic, because I don’t think it matters. The important thing that we’ve learned is that even though he wasn’t allergic to it before, he is now for some reason. We’ve made a note of this in his medical binder, and we will have to remember to mention it whenever we’re asked if he has any allergies.

Fortunately, the allergic reaction didn’t last too long, and we could get back to focusing on getting him over the pneumonia. In reality, there’s not much for us to do in this regard. The antibiotic, steroid, and breathing treatments do most of the work.

Halloween

Unfortunately, James couldn’t partake in any Halloween festivities this year. With the pneumonia, he needed to stay home, rest, and focus on getting better. Sorry, but he didn’t have an exciting Halloween costume this year. Just a simple shirt:

Epilepsy Awareness Month

November is Epilepsy Awareness Month and Stacy is having her annual 31 fundraiser for Epilepsy Awareness. She will be donating 20% of sales to the Epilepsy Foundation Greater Chicago. They offer “education, advocacy, and case management to people living with epilepsy, their families, and the communities in which they live, all in the service of helping our constituents seize the narrative back from epilepsy.” If you’re looking to get some of your holiday shopping done for friends, family, or your kid’s teachers while helping a good cause, here’s a link to the fundraiser:

https://www.mythirtyone.com/627441?pd=12321548

If you are not interested in making a purchase and would still like to make a donation to the Epilepsy Foundation Greater Chicago, visit their How to Give webpage for the various ways that you can donate.