It’s been a rough few weeks around here. If you recall, James had a fever a couple of weeks ago…or was it a month ago? Sometimes it feels like the days all merge together and I lose track of what day it is. Looking back at Stacy’s notes, he had a fever the fever on January 19th, so about a month ago from the date of this post. Anyway, that fever appeared one night and was gone the following morning. We sensed that he was fighting a little something because he just seemed a bit off, but the fever only lasted one night, which we thought was weird.

On the night of Monday, February 8th, that fever made a return.

This time it hung around a little longer than overnight. We thought it was best for him to just lay low and stay home from school for a few days.

On Thursday the 11th, we had a wake to go to and thought we that James was well enough to get out of the house for a couple of hours. In hindsight, he probably would have been better off if he stayed home. After we said our condolences and chatted for a bit, we were getting back into the van to leave, and there was a bit of an accident. Our van has a wheelchair ramp that folds out on the passenger side and a jump seat behind the driver’s seat where James sits. Here are a couple of pictures to help you visualize the ramp and the seat that James sits in.

Although James does have a wheelchair, and the van does have the tiedowns to lock a wheelchair in place, we are still using his car seat. We just don’t feel like his current wheelchair offers side and head support to protect him if we were ever in a car accident. We are in the process of getting James fitted for a new wheelchair and if it has more support, we may start using our wheelchair accessible van as it was intended.

The normal procedure to get James from his wheelchair and into his car seat in the van is to disconnect his pulse ox probe from his pulse ox machine, lift him out of his wheelchair, carry him up the ramp and put him in his car seat. Once he is buckled into his car seat, we roll the wheelchair up the ramp, strap it down next to him, and reconnect the pulse ox. For the past year and a half, we have never had a problem with this procedure…until now.

As Stacy was carrying James up the ramp, the cord for the pulse ox probe attached to James’ foot got caught on the ramp. Stacy and James went down pretty hard. He bumped his head on something, but it happened so fast that I didn’t see what. He had a little bit of blood coming out of his ear and mouth. Fortunately, his pediatrician was at the wake, so I quickly ran inside to get him. He looked James over and didn’t think it was anything serious. He told us to go home and to call him if things don’t seem right. That night everything seemed fine. Nothing seemed abnormal for James.

The next morning that all changed. He woke up with a high heartrate in the 140s, and it progressively got higher as the morning went on, eventually getting into the 170s. His sats (oxygen level in the blood) were all over the board, too. We weren’t sure if the numbers on the pulse ox were right, on not. They were bouncing around too much. Stacy called palliative care to request that a nurse stop by. The nurse didn’t think that the fall the day before had anything to do with his high heartrate and low sats. She did note that his left lung sounded diminished and recommended we take him to the ER for a chest x-ray to see if it was pneumonia.

Yep, it was. Pneumonia, RSV, and a perforated ear drum. RSV, or respiratory syncytial virus is a common respiratory virus that usually causes mild, cold-like symptoms. The ER doc spoke with our pediatrician, and they didn’t think James required a hospital stay. He was prescribed ear drops for the ear, and an antibiotic for the pneumonia.

Saturday morning another palliative nurse stopped by to check on James. She had never seen James before and when she saw his sats at 91 and heart rate at 176, she kind of freaked out. She listened to his lungs and said the left one was still diminished and not moving much air. Stacy put him on his belly on his cooling mat and his sats came up to 97 and heart rate dropped down in the 150s. The nurse felt a little bit better with those numbers but was still concerned about the heart rate being that high. We explained that that was just James. He has a high heart rate when he is not feeling well. I am not sure, but I think it might have to do with the fact that he has to work extra hard to breathe when he essentially only has one lung working.

Saturday afternoon it seemed like he was starting to turn the corner. He had three seizures within five minutes, which is a sign that he’s feeling better. He usually doesn’t have seizures when he is not feeling well. We tried him off of oxygen to see how he did, and he did pretty well:

Sats stayed in the 90s, his heartrate was down into the 120s, and his fever was gone. Go James go!

My mom and sis stopped by on Sunday to check in on us and bring us food.

James continued to do well most of this week. We really thought the worst of it was over, he could just chill at home, continue to heal, and be back at school next week.

The little bugger had other plans, though. He made a bit of a U-turn yesterday, started double breathing, was really gunky, and couldn’t keep his sats up, so we put him back on oxygen. He also started hiccupping. We’ve learned from past experience that when James has frequent hiccups, it means he’s having some GI issues and isn’t digesting his food properly. We drained some of the formula that was sitting in his belly and stopped giving him his normal formula feeds to give his stomach a little bit of a rest. Instead of his formula, we’ve been giving him Pedialyte to keep him hydrated.

Hopefully he’ll turn around again in the next couple of days, start breathing better, and be able to digest his food again. One day at a time.

Positive News

I’ll end this post with some positive news. James went to the neurologist for a checkup on Friday. He said yes to James trying Charlotte’s Web CBD oil to help control his seizures! This was something we brought up with him a while ago, but because it’s relatively new, he wanted to do some research and talk to other doctors about it before giving us the green light.

James has a VEEG (video EEG) next month and we’ll discuss it more then. I think we’ve tried pretty much everything there is to try to get James’ seizures under control, and nothing has worked yet. Keep your fingers crossed that Charlotte’s Web will be the cure that we’ve been looking for for the past 6 years.