Some days I wish we had a soundproof room that we could go into and just scream and let out all of the frustration. As you know, James has been having a rough couple of weeks. We don’t know what the hell is going on with him. We just want whatever it is to go away! We thought he was getting better, but then he goes backwards. Then he starts to feel better, and then goes backwards again. He’s been very juicy. Sometimes it’s a constant flow of secretions out of his mouth, like in the video below that Stacy took on Monday and posted on his Facebook page:

https://www.facebook.com/fansofjames/videos/10152181771530567

Because James doesn’t know how to swallow, he can’t manage his own secretions, so we need to suction as much of it out as we can, because if they happen to go the wrong way and into his lungs, it will turn into pneumonia.

As Stacy mentioned in the video I linked to above, we took James to the neurologist to have his VNS turned off on Tuesday. We wanted to rule that out as a cause of the crazy amount of secretions. While we were at the hospital, we also did a urine culture because he hasn’t been peeing like he normally does, and when he does pee, it has a different odor to it.

Even though the VNS was set at a very low setting, Stacy and I think that it was working. Wednesday morning we noticed some twitches. He wasn’t having full blown seizures, but it seemed like he was having some sort of seizure activity going on in his brain. He was still a bit juicy, but not as bad as he had been. His sats were also staying decent and not bouncing all over the place like they had been over the past couple of weeks.

Thursday he seemed to be a bit dehydrated; he went 12 hours without a wet diaper. Stacy gave him extra fluids throughout the day, but still no wet diaper by the time she put him to bed. That quickly changed…he had 3 wet diapers by 8 am Friday morning!

Friday she kept up with the extra fluids. Interestingly, once he was hydrated again, he didn’t need as much suctioning, and his sats were still staying at a good level.

Yesterday he had a good day. Today, too. Fingers crossed that he is finally over this.

Stacy and I want to say a special thank you to everyone who has helped Stacy get James to doctor appointments these past few weeks. I try to be there as much as I can, but I can’t always get off of work. With James being so juicy, Stacy can’t take him by herself; he requires too much suctioning. So, thank you to everyone who chauffeured them to appointments so Stacy could sit in the backseat with James and suction when he needed it.

 

First Wheelchair

James was supposed to get his first wheelchair in mid-August, before he started school. Because of a mix up, or someone not doing their job, the wheelchair was never ordered in February like we were told it was. They re-ordered it in August, and it was finally delivered on Thursday. The funny thing is that we got it so that he could get around at school. He’s been out of school sick more than he’s been in school. Hopefully he’s done with this illness, and he can get back to school and show off his cool chair.

 

James’ first wheelchair

 

Fundraiser

If you haven’t ordered your Rollin’ for James shirts yet, you have a couple of weeks left to get your orders in:

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