11/04/2026
Update:
Dylan was better on Sunday and Monday. His coloring was better, fever subsided. Seemed to be turning a corner.
Monday night he was “off” and started with fever again. The fevers he’s been having intermittently have not been high. They’re like 99, 100.5 sometimes 101 , but typically not any higher than 100.5.
yesterday he had a baclofen pump appointment and since it was election day, did not have school. I proactively reached out to infectious disease to let them know that he was not getting any better and in fact, maybe worsening with symptoms and the intermittent fevers were back.
I questioned whether it might make sense, since we were already going to be at the Medical Center, to go ahead and rerun chest x-ray and bloodwork
Clearly, we have been through this before. This is not my first rodeo.
They agreed with me and so after we got his Baclofen Pump adjusted we headed over to get a chest x-ray and bloodwork
While his blood work is stable, the chest x-ray does indicate two things. One,his pneumonia has worsened and two, he has a significant amount of gas now in his bowel which explains why we had a rough night Monday night.
Last night, the infectious disease doctor called me and added another antibiotic to Dylan’s regimen in hopes that we can kick this nasty infection to the curb. I guess the thing that’s keeping me up and frustrating me is, why did we not hit it as hard as we could a week ago when we caught it early? Why are we waiting until it worsens before we hit it with everything we’ve got? Especially with his history of pneumonia and pulmonary effusion of his left lung.
But I’m not the doctor (but at this point, maybe I should be?). It seems to me that if he gets sick with this, let’s just throw everything we can add when we catch it early so that we don’t have to wait for it to worsen. But what do I know? I’m just the mom that has to stay up with him all night as a result of bad decisions and medical decisions that happen about a slow as molasses. 
We kept him home from school today because last night was a rough night. He just had a very difficult time with a lot of coughing and not able to settle. I did everything i know to do and was up pretty much all night with him.
We are making sure to increase the number of vests, nebulizers, stander time and keeping him upright as well as supporting him with oxygen so that he doesn’t have to work so hard to breathe while his body works to beat this nasty infection.
I also had a zoom call with a immunologist. I met her a few weeks back at a work conference and just asked her if she would be willing to listen to me about Dylan’s case and just review everything and see if there’s anything else that she can think of that we can do to try to keep him from getting sick so often. We went over everything today and she’s ordering some additional bloodwork, including looking at his immunoglobulins as well as his titer for Pneumovax. It felt good to just have someone listen as I laid everything out and ask questions and think outside the box.  we have to wait until Dylan is back to baseline and then 10 days out from there before we can go get this blood work so that we have a good picture of what his baseline blood work looks like. Then she and I will circle back and she will let me know if she has any other ideas or suggestions on what we can do for him .
I’m trying to do everything that I can think of to help him get better and stay well.
It is probably gonna take several days for him to fully recover. the antibiotics He is on go for another 10 days. When Dylan gets sick, it takes him a significant amount of time to overcome it. I’m hopeful with our care and your prayers, We can overcome it quickly.
Slow and steady

