It has been almost a month since David’s VNS surgery. The surgery went extremely well. No complications whatsoever. He has two scars that seem to have healed well. We’ve not seen any negative side effects at this time.
David was required to stay home for two weeks post-surgery and was cleared to go back to school as long as he did not participate in P.E. until cleared. His appointment to be cleared is in a couple of days.
In the past couple of weeks, we’ve noticed a few changes.
First, when David does go into a “medicinal rage,” it is much easier to get him out of it. I’m able to reason with him, and then he is able to more easily transition into what he was doing before he got upset. Also, these “medicinal rages” happen less often than they did before the surgery. Pre-surgery we were experiencing maybe four or five a day, and now it has gone down to one or two, sometimes none. So these rages are definitely less intense, shorter, and fewer.
The implant (which is controlled by his neurologist) is set to increase the electrical current every couple of weeks. Originally he started out getting .25 milliamps every 5 minutes. Now, he is getting .5 milliamps every 5 minutes. And on Wednesday it is set to increase to .75 milliamps every 5 minutes. We will continue increasing until he reaches 1.5 milliamps.
Another change we’ve noticed is that with the first increase (to .5 milliamps), David’s voice would sound sort of robotic every time the device sent the electrical current to his brain. Thankfully, he thinks it is awesome because he “almost sounds like Darth Vader.”
In addition to David’s surgery, we have been weaning the rest of the phenobarbital for the last month. Currently, he is on 8.1 mg twice a day- which is amazing! Before the beginning of this wean (the first half of which was an inpatient wean due to how dangerous the process can be) he was at 64.2 mg in the morning, and 80 mg at night. It is so good to see progress in weaning this medication! And even more incredible, David has experienced NO seizures during this whole process!
So far, David has been able to resume his normal lifestyle besides roughhousing and any other extreme physical activity. He had a great time at a birthday party at the Railroad Museum, and also had a birthday himself! David is now 9 years old!
As I mentioned earlier, David has another appointment later this week to (hopefully) clear him to return to normal physical activity. He is also set for his implant to increase to .75 milliamps.
I’ll continue to update as time goes on. In the meantime, we have a couple of things we’d like you to be in prayer with us for. First, David’s continued healing. Second, the military will be moving us in a few months. Thankfully we will be able to finish out the school year here, but we will soon be looking for a new house, new doctors, a new school, a new church, and possibly a new job or going back to school for me- all of which will be scary considering David’s condition. If you remember, he did not become ill until after we moved to FL, just two years ago. Moving with a chronically ill child will be a new experience for us, and we just want God to order our steps to the right everything.
We love and appreciate you all. Thank you for continuing on this journey with us.