Sorry that it’s been a few weeks since my last post. We’ve been a bit busy with a project. As long as the weather cooperates, we should be finished next weekend and I’ll be able to fill you in on what we’ve been working on. For now, I’ll just update you on how school is going (or not going) and the results of the video EEG that James had about three weeks ago.
In and Out of School
The school district has still been unsuccessful at finding a full-time nurse for James. This is so far beyond getting old that we don’t know what to call it. He had an awesome nurse that the district let go on April 17th—for what we feel is a BS reason—and they have been trying to find a replacement nurse ever since. It takes a special kind of person to want to take care of James, and that’s where most of the problem is. They just can’t find that person.
In addition to trying to find a full-time nurse for James, they were also looking for a substitute nurse for those times that the full-time nurse is not able to be at school. On Friday, May 8th Stacy and James met the nurse who was to be the substitute and was ready to go back to school (finally) that following Monday. Monday morning came rolling around and James was ready to get back into the classroom with his classmates, but there was a problem. The substitute nurse hadn’t been cleared by the district to go into the school yet! Are you freaking kidding?!
Tuesday the 12th we thought everything was set and James could finally go back to school. WRONG! The nurse didn’t show up at school! Yet another day of sitting home and watching TV:
They were able to find a nurse that was able to be with him at school on Wednesday, May 13th and Thursday the 14th, so at least he got back into school for a couple of days. The nurse said he did good and worked hard. I sure hope so. He’s been out of school for like a month, so he should have been pretty well rested.
And because he was back in school on the 13th and 14th, he was able to participate in the Special Olympics Young Athletes meet on Friday the 15th.
The school year is over now, and as bad as the past month and a half has been, James managed to finish it on a positive note and got a reading award.
I think the last several weeks of not knowing if James was going to go to school or not were hard for both James and Stacy. When you have a medically complicated kid, with the feedings, and the meds, and whatever else, the one thing that helps is having a routine. With James being at school some days, and home other days, it really messed with the routine because he has a slightly different morning and afternoon routine depending on if he goes to school or not. It’s hard starting the day not knowing which routine you’re going to be on.
James is supposed to be in Summer School, which starts on June 18th, but we’re not sure if he’ll have a nurse. We’re not holding our breath, but we’re not giving up hope either. Stacy took a look at job postings within the district and there is one for a 1-on-1 nurse. We’re not sure if this is for James or not, though. Hopefully it is and they’ll get some good applicants so this poor kid can be in school and not stuck at home all summer. Please keep your fingers crossed.
There is one final thing that I want to mention before I switch topics. James is entitled to a certain amount of education and therapy hours. He has missed out on countless hours of both of those by no fault of his or ours. Stacy has been keeping track of those days and hours, so we know how many hours he is owed…and it’s a lot. We have no idea how the district plans on making up all of these hours.
Video EEG (VEEG) Results
A few weeks ago, James had an overnight video EEG, which he has from time to time to see if his seizures are improving, staying the same, or getting worse. Based on what the VEEG shows, the neurologist will make adjustments to his seizure meds and/or VNS settings. We had a follow-up with the neuro this past Friday to go over the results.
The neuro said that his seizures have increased in frequency, but not intensity, and still last about 3 seconds. The neuro made an adjustment to James’ VNS and increased the intensity of the pulse that is sent to his brain, but not the frequency, which is currently every 2 minutes. We’ll leave it there for a month and then decide if we want to keep it there or if we want to increase the frequency from every 2 minutes down to every 1 minute. Another option, instead of increasing the frequency, would be to start weaning James off of one of his seizure medications.
Overall, we think the VNS has been a great tool to combat James’ seizures. It does, however, have one somewhat major side effect. Because the VNS attached to the vagus nerve in the neck, it has the tendency to increase secretions in James, and since he can’t manage his own secretions, it can be a bit problematic. As much as we try to prepare ourselves for it, we really can’t. We just know it’s coming and try to be ready to give him the extra suctioning he needs. This weekend was a little rough, but as his body adjusts to the new VNS settings, it should get better. Fingers crossed.
