The VNS was turned on to a low constant voltage on Day 2 and will be increased every 1 to 2 weeks for the next couple months. The neurologist continues to tell us that we may not see any improvement for 6 months to one year, or even two years. That is a long time to wait to see improvement or even know if this was successful. But, we went into this all knowing and understanding that the success rate is not high for Nathan's type of epilepsy. We will just continue to hope and pray. There are other side benefits that may show over time such as improved behavior or mood and increased alertness. For now, his seizures are the same as they were before. Some days they seem worse and some days slightly better, but that is how it has been for the last six months.
The biggest challenge now is trying to find a rehab vendor to help us get new wheelchair straps for Nathan. The vendor that my insurance company switched to this year would see nothing urgent about a house burning down. Our earliest emergency appointment is still 2 weeks away. I was able to get my insurance company to agree to let us go back to our old company for his existing rehab equipment, but apparantly they don't want our business. After 2 weeks of phone calls and emails offering to pay cash, I cannot even get any response. So, in the meantime Nathan has to use inappropriate constraining straps. We have modified them a bit ourselves, but he really needs some that do not pull tight across his incisions or his newly implanted device. His only method of transport is by riding in the wheelchair in our van, so it is not an option to leave him out of the wheelchair in the meantime. What a frustrating industry!!!
We are now turning our sites to a much needed family vacation to Disneyland in early June. The last trip to Disneyland was wonderful for Nathan, his disposition, and his seizures. We look forward to another fun filled adventure. More to come on that later.
As always, thank you all for your kind words, prayers, and support as Nathan went thru this procedure. It is some higher power that keeps Nathan going and you are all part of that for our family.