Wednesday, April 23, 2014

Home Is Where You Rest Your Feet

The title of this post comes from an old sign my mom had hanging in her house years ago and I love it. It certainly applies to our home these days.

Monday was one of the hardest days of our lives. Period. It's commonplace to remove the depth electrodes at the bedside these days rather than taking the patient back to OR because they don't use general Anesthesia for the procedure either in OR or at bedside- just a local via a shot to each electrode site before removal. During my stay I had numerous nurses comment that they had not seen someone with so many depth electrodes as I had before. I had 20 total-10 on each side of my brain. I'm not sure if this was the major factor in making the removal torment or if it was my lack of response to the local but either way I was given the local, which I felt each pierce and after only a couple I passed out cold and a "White" code was called. Extra nursing support was called with an AED (thankfully they didn't have to use that!) and the Dr. immediately started pinching me hard to get me to wake up. I did eventually come to and was able to make it through the rest of the procedure although it was the worst pain I've ever been through in my life and I would take 100 labor pains over that any day! My poor husband was scared to death and we both were completely wiped out by the end of it.

The added movement I gained from not being tied to my electrodes was something to be thankful for out of all of that. I do continue to have trouble using my right leg but we are hopeful that it will improve in the coming weeks as I am up and about more and more. For now it just feels like I have a numb leg that only has partial strength…weird. The Dr.'s said that it's most likely because I had a small bleed during the placement of my electrodes and that it sometimes happens but typically straightens itself out in a couple of weeks. They are recommending physical therapy if it doesn't improve in a couple of weeks.

Yesterday's reunion with the kids was so great! They ran right to us and were cuddly and all smiles! Yay!! We have missed them so so much and it's been great to be home again with them. I definitely need prayers for strength though because right now I am not strong enough to take care of them alone and that is something we will need eventually. I know it will come and until then I need to give myself the time to heal but it really is difficult to be home with them and not be able to do things like take them upstairs to bed or change their diapers. :( They are being so great though and giving me lots of hugs and kisses which is so sweet!

 Today we got to watch the kids play outside in their new playhouse. They absolutely love being outside so we bought this for them before we left and my dad set it up so they would have something fun to play with outside while we were gone. They love it and there are "girl"and "boy" features that they both enjoy like a tool bench and a kitchen! So fun!
Here are a couple of catch up pictures for you from our journey. I had some trouble getting pictures on the blog from my phone so here they are for you. :D

The first day after surgery…look at all my wires! :D They did eventually wrap them up so they weren't all over the place. And yes I was still out cold from Anesthesia! I pretty much didn't remember anything from Wed. to the Saturday after Surgery…Haha! I'm a little touchy when it comes to anesthesia. 

FaceTime with the kiddos! The best moments of our time there was spent chatting with the kiddos. They did great on the video chat too! Waving and blowing kisses! 

My stimulator. This little gadget sends small electrical currents to my brain to stop seizures. This is how they know that I respond well to stimulation and it makes me an ideal candidate for a Deep Brain stimulator.
So moving forward we are waiting for some more information about the Deep Brain Stimulator for me. Currently the DBS is used most commonly for Parkinson's and not as common for Epilepsy. I was getting a couple of different stories from a few different Dr.'s and was under the impression at first that they had NEVER EVER put a DBS in for Epilepsy at all but that isn't the case. It has been done before but it's very rare. So I would not be the first one but I would be one of a few who have the DBS for Epilepsy and we would need to get the stimulator donated by the maker and we would also need our insurance to get behind the procedure. My Dr.'s are working on these things and we are waiting to see what happens. Thankfully, our Dr. has friends in the FDA department and they have given their approval for it so we've crossed that path already so now it's just a problem of the device and procedure costs. We'll update you on what we find.

Hope you all are well and enjoying the spring.


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