With James being out of school so much because of whatever this illness is, the school emailed Stacy paperwork for homebound services. We didn’t know that we had this option, but we think it will be good if he can get his therapies done at home. The only problem is that we need to estimate how much time James will be out of school.

“The Medical Certification form must estimate that the student will need the service for a minimum of 2 consecutive weeks. (The terms “indefinite” or “undetermined” are not acceptable for estimating approximate length of time.)”

We have no idea how long he will be out of school.

He did start out the week a little bit better. On Monday Stacy was able to wean James off oxygen a little. There was a span of about three hours that he wasn’t on oxygen at all. His sats were up and down a bit while the oxygen was off, but he was stable. We had been giving him breathing treatments every two or three hours, so maybe those are helping.

Stacy was able to get James into the neurologist on Tuesday afternoon hoping that we could get the VNS turned off until he is over this illness. We wanted James to get back to his normal self and then turn it back on. After having a discussion about this, Stacy and the neuro decided to leave it on. I was not at the appointment so I couldn’t put my 2 cents in, but I trust Stacy’s judgement….and the neurologist’s.

On Thursday we took James back to the pediatrician and he sent James down to get a chest x-ray to see if there was anything there. Fortunately, the x-ray was clear. No pneumonia. He did prescribe another round of antibiotics, and a round of steroids. It may be too early to tell, but we’re not sure if these are doing anything. His sats have still been pretty wonky.

Friday afternoon Stacy started having a little bit of a breakdown. She’s tired and frustrated and trying to figure out what the hell is going on with James. He was struggling to breathe, and he just couldn’t get his sats above 90 so she put him on oxygen. At first, he seemed to be doing better, but then went downhill so she turned the oxygen up to 3 liters. No change. She tried 4 liters. Still no change. She called home health to order some more oxygen tanks because having James on that much oxygen, the tanks would run out really quick.

They questioned why she was using the oxygen tanks when they gave us an oxygen concentrator a while back. When we got the concentrator, we weren’t really told much about it. We thought that since it was basically taking the air in the room, pulling out the oxygen and sending it into your nose, it couldn’t be as good as the oxygen that’s in a tank. We’ve used the concentrator when James needed just a little boost, but when he needs a large amount of oxygen to get his sats up we use the oxygen tanks. The tech at home health told Stacy that the concentrator is the same as tank oxygen so we should be using that. Stacy switched back to the concentrator but was still frustrated that he was on 4 liters and was unable to get his sats above 90.

Yesterday and today he seemed to be doing better. Maybe the antibiotics and steroid are finally starting to kick in. Let’s hope so and he’s finally over whatever this is.

I really wish I could be home to help Stacy out more. It’s a lot for her to handle. She does an amazing job, but it is a lot of work. I do help out at night and on the weekends, but during the week when I’m working, it’s all on her. I think I said this a couple of years ago, but if anyone wants to send us a million-dollar donation so I can quit my job and stay home to help Stacy take care of James, we would appreciate it.

Fundraiser

If you don’t have a million dollars to send our way but would like to help us raise money for a wheelchair accessible van, we are having another fundraiser. Stacy reached out to a local company, 3E Love, to see if they would be interested in doing a fundraiser for us, and they said yes. Follow the link below to find out more:

https://www.3elove.com/pages/rollin-for-james-fundraiser

Orders must be made by November 15th.

And don’t forget to keep praying for James.