Nathan's Recovery

It's taken me awhile to write an update on Nathan. He has been recovering quite well from his surgery two weeks ago. In fact, as of tomorrow, he will no longer be under any physical restrictions (imposed by the surgeon, that is). His incisions look great, considering. The first few days were rough as he had a tough time keeping medications and food down, and he ran a fever on and off for about a week. The worst part was removing the bandages after 4 days. They were stuck so tightly to his skin, that I think the pain of removing the bandages was as bad as the pain of the incisions themsevles. Since then, he has been doing amazing - he's such a trooper for what he goes through.

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.

Nathan's Post Op

Dear Friends & Fam,

Thank you all for your prayers and well wishes for Nathan. He made it through his surgery today like a champ. Everything went smoothly including the surgery occuring on-time despite an afternoon slot. The surgical procedure was a success, assuming all heals well. The success of the VNS will not be known for some time. We will have the device turned on tomorrow by the neurologist and will see where we go from there. We could see results soon, after a year, or not at all. I'm going to take the rainbow we saw on the drive home as a good sign that there is pot of gold at the other end of this journey.

We are thrilled with how today went. Anethesia is very scary for Nathan, and it went very well. He was taken off of oxygen about 1 1/2 hours into his post op recovery. Although he did not want to wake up for a very long time, we finally got him roused enough to bring him home. He's doing okay so far. He is very tender in both of his incision areas and unfortunately vomitted up his pain & seizure meds tonight at home. Hopefully we will be able to get some more meds in him in a few hours and keep them down.

We encountered some wonderful nurses and doctors today and were especially thrilled with the child life specialist that brought Nathan a CD player to listen to while waiting to go to surgery. Such a nice touch in the hustle & bustle of a hospital.

We are also so very touched by all the prayers and well wishes from all of you. Thanks to all of you of and an extra special thanks to Amy & Barb for taking care of Madison & Zach this evening.

We will post more when we know more.

April Update

Happy 5th Birthday to Nathan. Wow – it’s been an amazing five years for the little man. His birthday was over one month ago, on March 1st, and I’ve been meaning to post about his general well being and birthday ever since.

Nathan’s birthday celebration was pretty low key as he was still sick. As usual, we celebrated his birthday with the McCue clan. We also had a very nice visit with Auntie Glo from Indiana a week before his birthday.

Nathan was sick for 2 months starting in January, but dare I jinx it to say that he is doing better? He was on oxygen for 2 months which was a really long stint. We never got a real diagnosis or cause of his symptoms despite millions of tests. Ok, maybe not millions, but it sure felt like it. He would spike a really high fever every 2-3 days, was incredibly lethargic, and had constant low oxygen saturation levels. We ruled out pneumonia, and a host of other infections. So, we rode it out like most of his challenges and we are now enjoying his sweet disposition again.

Unfortunately the seizures are still really bad. Maybe worse than before the illness. It’s hard to tell. We took him off the new seizure med he started (the one with blindness as a side effect). We didn’t think it was helping and the timing coincided with his illness. Not saying there is a correlation, but definitely a coincidence. After we stopped the med, he began to get healthier. We may try it again down the road, but not right now.

Nathan's big news is that we finally have his surgery to implant a Vegus Nerve Stimulator (VNS) scheduled on Monday. Yikes! That's in just 2 more days. The procedure should be pretty straightforward (for a neuro-surgeon, that is), but the anesthesia is always scary. And then there is the risk of infection. And then he will have a device implanted in him forever. We so hope it works. This really is the last available option we have for seizure control at this point in time. We’ve done everything else and hope that if this does not work that medical research will progress to the point that we have a better treatment for epilepsy in Nathan's (and so many other children's) lifetime. It is so incredibly heartbreaking to watch seizures take away a little of someone's congitive development and life day after day.

We would appreciate your prayers and well wishes for a safe surgery, speedy recovery, and most importantly to Nathan - improved seizure control. He is very blessed to have so many people that love him in his life (and so are we). The surgery is scheduled for 1pm at Sutter Memorial Hospital on Monday.

Thank you as always....

I’ll post sometime after the surgery to let you all know how it goes.