Shame on me for not updating my blog since that last post about the change in dates. It isn't like I haven't had a LOT on my mind to share, but just like everyone else I have been knee-deep in life. Maybe even thigh-deep...coming close to my waist. As I write this, Caleigh is continuing to rest and recover in her own sweet time. I have a few observations to share (surprise!) now that we have reached this point, but first I need to say how blessed we are to have so many people who support us. The prayers, calls, texts, gifts, meals...we appreciated everything more than we can say. Help at school and help from neighbors to get all the details in place so that we could be gone and focus on Caleigh...we are so very thankful for this as well. I know at least one family who is probably facing vns surgery soon, and others may read this as well--so I want to share a few things for them, and for my own documentation purposes.
1. If given the option for an overnight stay, take it. We were given the option and did not choose to do so which I regret. It should have been encouraged, not just mentioned. Children with epilepsy, at least in Caleigh's case, need time to wake up. This is something that I will be sharing with her doctors.
2. Some numbers that "changed" during our experience. We were initially told that she would have the device activated in one week. At surgery we were told 2 weeks. We were initially told that it would take "a while" to see the full effect of the surgery. Now they say 6 months AT LEAST. I'm not implying that anyone misled us, but ask specific questions.
3. I watched the surgeon note to place her chest incision under the arm...and he didn't. We're okay with that, but I want to know why. We'll address this with the surgeon at follow up next month. Nothing can be done now, and he may have a perfectly good reason, but I need to know.
4. It isn't as "quick and easy" as you're led to believe. It's still at least two hours of surgery with general anesthesia and two incisions. The incisions are bigger than I thought, and she has had some significant pain.
These are just observations. Would we still go through with it if given a do-over? Yes, but I would like to be more prepared. I still stand by my previous advice to NOT read too much. I read more than I should have last summer, but I gave myself time to forget a lot of that. In looking for some post-op information last night, I happened across some stuff I shouldn't have.
All in all, things are good. She will try to go to school tomorrow...although I'm not sure she's really ready. She still is sleeping a lot. She hasn't take much pain medication at all, mostly at night (and this morning when I took off the bandages!) but she is uncomfortable. Our appointment for May 20th is sort of a big deal to me. While we won't see the full benefit of the surgery for quite some time, we will see how she tolerates the device being turned on. I'm nervous about that, though I will not let her know.
Thanks again for every single prayer. We are so thankful to be at this point!
