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.
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.
5 comments:
Tricia....I will be praying for Nathan on Monday. I hope all goes well and you see marked improvement. AND...I am literally a block from Sutter Memorial....so if you need anything in the time you are there, please don't hesitate to call. 956-2501.
Karaleen
We will be praying for Nathan's surgery to go smoothly and to be successful. You all are an inspiration to us.
It is great to see all the new pictures...Nathan is getting so big!
We will be eager to hear how the surgery went so update when you can!
Hugs,
Pam & the boys
PS Tricia--I was at Starbucks today and did not see you! :-) I keep thinking our paths will cross...hopefully soon!
My prayers are definitely with you all. I'm glad to see that he is feeling better and I'm always happy to see the pictures you post.
I with there was something that I could do to help you all. Just know that I am here for you to vent to if and when needed.
Lori W
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