This is how our week started:
The picture above shows James’ pulse ox numbers on Monday evening. The top number is the oxygen saturation of his blood (sats), which isn’t concerning. That’s a decent number. What is concerning is the bottom number, which is his heart rate…171 beats per minute. We’ve come to learn that when his heartrate is elevated like that, he is either agitated about something, or he is not feeling well. Because he has been sick since October, we assumed it was the latter.
Stacy laid next to him for a bit to comfort him and try to get him to relax. She must have calmed herself down, too, because she ended up taking a nap. When she woke up, the numbers on his pulse ox looked like this:
Much, much better. Then Tuesday night rolled around, and he spiked a fever. Stacy started him on some Tylenol and brought out his cooling mat to try to bring his temp down. By Wednesday night, the fever was gone.
A nurse from palliative care came over on Thursday to assess him. She heard a little bit of a wheeze in his lungs, consulted with our pediatrician, and they decided to start him on a round of steroids in case this was the start of pneumonia. They also recommended breathing treatments every three hours.
Now this is where we started having a bit of a debate. We had plans to go away for Easter with my side of the family. The original plan was to pack up the car and hit the road late morning or early afternoon on Friday and be home Sunday afternoon.
After going back and forth, deciding if we should go or not, we decided to go. If James wasn’t doing well in the car, we could always turn around and go home. Since he seems to be more stable when he’s sleeping, we decided to leave early hoping that James would sleep for the hour and a half drive. And he did. Other than an occasional suctioning, he was perfectly fine. He was perfectly fine all day Friday and most of the day Saturday.
We had a nice buffet dinner Saturday night and went back to the room to give James his breathing treatment. I’d say he was about halfway done with the treatment when his sats dropped. At first, we didn’t think anything of it. Just a little bit of suctioning and his sats should pop back up. Well, they didn’t. He seemed to be getting progressively worse.
We ended up putting him on oxygen—we always travel with a tank—and I started packing the car as quickly as I could so we could head home. In the midst of me running back and forth packing the car, Stacy had a revelation. The last time she refilled the breathing treatments, Walgreens didn’t have the name brand version, and offered to refill the prescription with a generic. The breathing treatment we gave James Saturday night after dinner was the first one of the generics. She thinks he may have had some sort of reaction or allergy to the generic version.
We left the hotel around 12:15 am and got home at about 1:40 am…just in time for his oxygen tank to run empty. Once we laid him down in his bed, he was perfectly fine. Was that just his way of telling us that he wanted to be home in his own bed? Seriously, though, he has never had that bad of a reaction to a breathing treatment. The only thing that makes sense is that he had some sort of a reaction to the generic version of the breathing treatment.
Up until James got that breathing treatment, we were having a good weekend. Here are a few pics from our trip:
