This is going to be a busy weekend of writing. I’ve been trying to keep up with posting every four weeks or so, but every so often life happens, like James ending up in the hospital due to pneumonia. Those of you following James on Facebook are probably already aware of this. This post will be a synopsis of this latest hospital stay. As long as things stay calm around here, I’ll try to get another post—maybe two—about other things that have happened in our lives over the past month.
On Friday, November 16th, James had a hard time keeping his sats up at school, so his one-on-one nurse put him on oxygen. For James, sats above 85 is good. Once he gets below that, his pulse ox starts beeping. His nurse had to keep adjusting the amount of oxygen coming out of the tank—anywhere from 0.5 liters to 3.5 liters—in order to keep his sats above 85. After he got home from school, he didn’t seem to need oxygen and was able to keep his sats in the high 80s, and low 90s.
That Saturday his sats were good most of the day until about 4:30 pm when he got really dry. Stacy gave him a saline nebulizer treatment to put some moisture in his airways, but this made him really juicy, and dropped his sats to the mid- to high 80s. We put him to bed with his oxygen concentrator providing him with 1 liter of oxygen to keep his sats in the 90s.
Early Sunday morning things started going downhill fast. At around 1:30 am his pulse ox started beeping because his sats dropped below 85. Stacy did the normal suctioning of his nose and throat to clear his airways of any secretions or mucus, but his sats weren’t coming up. She bumped the oxygen level on the oxygen concentrator from 1 liter to 2 liters, which got his sats back up into the high 80s. An hour later, the same thing. Sats dropped below 85, more suctioning, and had to bump the concentrator up to 3 liters in order to get his sats back up.
Because James is unable to clear his own secretions, he occasionally gets a mucus plug in his throat. We thought that might be the issue so Stacy gave him a percussion vest treatment followed by a nebulizer to see if either of those would loosen up or breakup the mucus plug. He was still struggling a bit to breathe so at that point we knew it was time to call in reinforcements. We called palliative care and asked for a nurse to stop by and take a listen.
We pretty much knew what the nurse was going to say and started preparing for a trip to the ER while we waited for her to arrive. We were right and arrived at the ER by 3:30 am. When they saw James come in with oxygen, they almost immediately took him back to get assessed. Sats were 88, heart rate was 160, and a rectal temperature was 102 degrees. I realize that some of you may be taken back by his heart rate being 160. That is actually normal for James when he’s sick. It’s one of his tells.
They started him on a fever reducer/pain reliever and antibiotics to battle the more than likely pneumonia while they awaited a chest x-ray for confirmation. At 6:35 am we got that confirmation. James’ scoliosis often makes it hard to get a good read on the x-ray, but they did see something on his left lung that looked like pneumonia, and that meant that they were going to admit him. As much as we hate being in the hospital, we knew that was where he needed to be to get better and back to his normal self.
I went home to sleep for a few hours while Stacy and James got a little bit of sleep in the hospital room. I went back to the hospital in the early afternoon, and it was really good to see him awake, alert, and yelling at Handy Manny. He’s usually very lethargic when he is sick so hearing him voicing his opinion about what he was watching meant that he was feeling better.
James slept good Sunday night and was ready to start the day at 4 am on Monday morning. He had been on high-flow oxygen when he was admitted on Sunday and the goal for Monday was to start to wean him off of the high-flow and move to wall oxygen. If you’re wondering what high-flow oxygen is, you can read this article in by Masaji Nishimura in the Journal of Intensive Care or I can just give you part of the abstract from that article.
“High-flow nasal cannula (HFNC) oxygen therapy comprises an air/oxygen blender, an active humidifier, a single heated circuit, and a nasal cannula. It delivers adequately heated and humidified medical gas at up to 60 L/min of flow and is considered to have a number of physiological effects: reduction of anatomical dead space, PEEP effect, constant fraction of inspired oxygen, and good humidification. While there have been no big randomized clinical trials, it has been gaining attention as an innovative respiratory support for critically ill patients.”
By Monday evening they had him weaned pretty low on the high-flow oxygen to the point that he was practically just on room air. They were just using the high-flow machine for its heated humidity capability.
He had a few visitors stop by to see him on Sunday and Monday and has a couple of new friends to add to his stuffed animal collection.
We asked for help in naming the monkey on James’ Facebook page and chose the name that we liked the best. Here is James with “Spunky the Monkey”:
Did you happen to notice anything missing in the above picture? James is completely off of oxygen! The goal was to wean him off of the high-flow oxygen on Monday and switch over to wall oxygen probably on Tuesday. Well, that picture was taken Tuesday morning. This superstar went from high-flow oxygen to no oxygen at all!
Although he was off of oxygen on Tuesday, they wanted to keep him in the hospital one more night just to make sure he wasn’t going to backtrack. I told them that would be fine, but under one condition. They had to wheel in the “bubble light thingy”. I couldn’t remember what it was called, but they knew exactly what I was talking about.
It is a Vecta Mobile Sensory Station, and it has a tube of water with bubbles and balls and also several strands of fiber optic lights that all change color. It has speakers if you want to play some soothing music. It even has a projector on top to display rotating images on the wall or ceiling. We typically use it just for the bubble tube and the light strands. It’s very relaxing to watch. I thought it may be something that James might like to have at home…until I saw how much they cost. Several thousand dollars!! James, I love you, but I don’t think we will be getting you one of those.
Here are a couple of pictures of what it looks like. We also took a video, which I will include below the pictures. In the video, the stands of fiber optic light are hanging up on the right.
James (and Stacy) came home late afternoon on the 21st, just in time for Thanksgiving. We normally spend Thanksgiving with Stacy’s side of the family, but because James had just gotten out of the hospital, we decided to stay home to let him continue to recover. More about our Thanksgiving, and other happenings in tomorrow’s post.
