We are exhausted. Maybe a bit beyond that. Is there a word for being beyond exhausted? I am too tired to Google that. I don’t even know if I have the energy to write this post right now, but I have to at least get started. Maybe I’ll just write until I fall asleep and continue when I wake up.
Those of you who follow James on Facebook probably already know that these past six weeks or so have been really long. As I sat down to start writing about everything that’s happened, I realized that it would probably turn into a pretty long post, so I decided to break it up into three separate posts. Welcome to part 1.
If there is one thing that James excels in, it’s winding up in the hospital on a weekend. Dude, can’t you get sick on a Monday to give me an excuse to take time off work? Why do you always have to ruin our weekends with trips to the hospital? I am kidding. I know you can’t help when you get sick, but it’s just weird that it happens so often around a weekend. It’s almost as if you plan it that way.
Friday, July 9th
On Friday, July 9th, James was having respiratory issues again, which really isn’t abnormal for him anymore. It seems to be more common lately, but we haven’t been able to figure out why. For some of his recent respiratory episodes, we’ve been able to treat him at home. This time, however, we knew it was a bit worse than previous times, because he also had a fever, and was a bit dehydrated because he wasn’t peeing much. We took him to the ER—I mean ED—to get checked out.
Side note: I understand why they changed from ER (emergency room) to ED (emergency department), but I think I will always refer to it as the ER. That’s what I’ve always called it. And besides, thanks to that “blue pill”, whenever I see or hear ED, I think of erectile dysfunction.
Back to the story. While he was in the ER, they ran a bunch of tests to check for various viruses and did a chest x-ray. It didn’t come as much of a shock when the x-ray showed pneumonia. It was a bit odd that it was in the right lung, though. He typically gets it on the left side because that is the way his body leans, so gravity tends to carry it to that side.
There is usually a gap of time between when the x-ray tech leaves and the doctor comes in to tell us what we already know, so we have a few moments to discuss our game plan before the doctor says these five words: “we’re going to admit him.” Sometimes we prepare for a bit of a fight to take him home and treat him there, but this time we knew the best place for him was in the hospital. While we have successfully treated pneumonia at home with antibiotics, breathing treatments, and his percussion vest, the dehydration was a bit of a concern this time. That is something we’d have a hard time tackling at home. At least in the hospital they could give him IV fluids.
After we got settled into the room, I went down to the van and hauled everything up. There’s an old saying that goes something like, “if you bring it, you won’t need it, but if you don’t bring it, you will.” We’ve rephrased it to say, “if we bring everything James and Stacy will need for a stay in the hospital, James won’t be admitted. If we don’t bring anything, he will be.” Sometimes it works, but sometimes it doesn’t. This was one of those times that it didn’t work. We brought most everything they would need, and he was still admitted.
I did end up running back home to grab the ventilator that James mainly uses at night when he sleeps. Not sure if it helped or not, but that first night in the hospital was pretty uneventful.
Most of the tests that were taken in the ER came back good. The urine culture was clear, and the virus panel they ran against a bunch of different viruses came back negative for everything. It looked like it was just the pneumonia they needed to focus on…and the dehydration. They started him on antibiotics and fluids through an IV to start combatting both of those.
Saturday, July 10th
Saturday he had a bit of a rough day. He was having such a hard time keeping his sats up…even with oxygen. At one point, they used an Ambu bag on him three times in a thirty-minute time frame in an attempt to get his sats back up. The almost resorted to intubating him, but he managed to pick his sats up to a level that they were comfortable with.
In more positive news, they ran a blood gas test on Saturday which came back normal. They also did an echocardiogram (echo) on his heart because he was having an irregular heartbeat, which came back fine, too. Stacy and I know James better than anybody, so we knew that the erratic heart rate was more than likely due to the respiratory distress. He normally has an elevated heart rate when he is having difficulty breathing. It probably didn’t help to have nurses freaking out a little bit and an Anbu bag repeatedly placed on your face. I’m sure James was a bit scared with everything going on around him. If I were in James’ shoes, I would probably be, too.
Sunday, July 11th
James had a few respiratory episodes overnight where they needed to come in and use the Ambu bag on him a couple of times, but he bounced back. The decided to bring in their own ventilator and stop using ours because it would be easier for them to control the settings.
They did another x-ray and it looked cloudy, which the thought might have been fluid. He was no longer dehydrated so they started him on a diuretic to try to get rid of that fluid around his lungs to see if that would clear up the x-ray.
They started to give James some of his normal formula at a very slow rate to see if he would tolerate it.
Maggie was having a hard time with all of this, too. She didn’t know where her Momma and brother were. She really has become a momma’s girl. Stacy and Maggie have a developed a strong bond. We tried to do a video call between Maggie and Stacy, but we don’t think she understood that momma was in the screen. She just stared at Stacy. No emotion.
Monday, July 12th
Monday’s chest x-ray was marked “much improved”, which was good news. The diuretic must have been doing its job. James was handling the feeds they started on Sunday, so they bumped it up a bit. They lowered the settings on the ventilator with the hope that they could move him off the ventilator and back to a nasal canula for oxygen.
The day before we brought James to the ER, Stacy was calling around trying to find a doctor to look at the wound on James’ tailbone to get an opinion and see if it could be surgically repaired. For those of you just tuning in, James has had an open wound around his tailbone that appeared shortly after his spinal fusion surgery in 2019. Stacy has been doing her best to take care of it so that it doesn’t get infected, but it has been slowly getting worse. I refuse to look at it because I would probably pass out, but she swears that she can see bone. Stacy figured that since James was in the hospital, why not see if there was someone who specialized in wound care that could take a look and give us some ideas. They found someone who gave Stacy some training on how to pack and dress it and recommended that we look for a surgeon to close it up. They also recommended that we add Juven to James’ food to aid with wound care. We had never heard of it, but it’s supposed to help with the healing of wounds by “enhancing collagen formation is as little as 2 weeks.” I guess it couldn’t hurt to try it, right?
Tuesday, July 13th
He’s on the right path. They upped his feeds a little bit more and put him on high-flow oxygen instead of the ventilator during the day. He will continue to use the ventilator at night, just as he does when he’s at home.
Wednesday, July 14th
He had been handling the increased feeds and the high-flow oxygen so well that that they started mentioning the word “home”.
Thursday, July 15th
James was moved from high-flow oxygen to regular oxygen, and they said if he did well on that, there was no reason to keep him any longer. If you can’t tell from the pic above, he is out of there!
That concludes Part 1 of this three-part series. It took me a few days to write this, so expect Part 2 to be released maybe as early as this weekend. Of course, that all depends on if we have another situation that will turn this thee-part series into a four-parter.
To give you a little preview of what to expect in Part 2, Stacy had been trying to find a surgeon while James was in the hospital to look at his tailbone wound and see if surgery might be an option. Unfortunately, she was unable to find one, but instead found one at a different hospital. We met with him on July 19th. That’s all I will reveal for now. You’ll have to wait until Part 2 to find out how that meeting went and what happened next.
