Wednesday, March 31, 2010
One of Jeremy's electrodes were not fastened tight enough, so off came the head sock and on went more glue.
Mom visiting in our room after Jeremy's testing was finally over
So today was a very busy day for Jeremy, after he woke up and ate breakfast, he had testing for the next 6 hours or so. They were tests that I had to be out of the room for, so my mom drove over and we ate lunch in the cafeteria together and then just sat outside in the warm sun and talked. Have I mentioned how beautiful this hospital is? Well, it is beautiful. Jeremy was done with his testing around three. He thinks he did bad on it. There were many questions where he had to repeat numbers, phrases, etc. His memory has suffered from these seizures, but I personally feel like it has gotten a bit better the past couple weeks. So some of the blood tests from our last visit showed some markers for autoimmune diseases, so they are also looking into those, there is a rare one they are really looking at that is related to his thyroid. It can cause uncontrollable seizures suddenly as well, so it will be interesting to see what the next batch of blood work reveals. I was able to transfer the data from my video camera to my computer and then burn a disk of seizures I had been able to record Jeremy having since we were here a couple weeks ago. They have cut his medication down from 700 mg. of Dilantin to 200 mg of Dilantin, we are just waiting for him to have his seizures so they can start analyzing the data from his brain. It is so odd not praying for him to be seizure free at the moment. We have been doing that for the past 3 years, now that we are here we need him to continue having them so they can help determine a plan of action. So tonight I pulled my chair/bed next to him and we watched a movie, it is weird being here without the kids, we are missing them terribly, but they are having so much fun at Brigette and Grandma's house. I was joking with Jeremy that maybe we need the kids here to get his seizures going, it gets quite stressful when they fight back and forth with each other. They are having fun though, Skyler went to the fair with Grandma and Kenzie is here in Phoenix and went to the park with Aunt Brigette and her cousins Jack and Chloee. We are so blessed to have such an amazing family. We love you guys, thanks for the prayers.
Tuesday, March 30, 2010
So I thought I would try and document part of our stay here at the Mayo Clinic. I have not posted a whole lot about Jeremy's health because it embarrasses him, but he doesn't really care anymore, he just wants to get better. Basically since mid January he has been having severe Gran Mal or the new name we have been told is Tonic Clonic seizures. He has had night-time mild seizures a couple times a month for the past 3 years, but in January, they began during the day, he just was walking out to his car and went down on the pavement and banged himself up pretty good, obviously he has not driven a car since that time. He has had some pretty good concussions and agreed to wear a helmet and had to use a cane for a while as well. He was going to Scripps Hospital in San Diego, but they just told us his EEG showed abnormal slowing in the left side of his brain and kept upping his dosasge of medication. His seizures were getting progressively worse, they were everyday and they were rough. Skyler walked in the bathroom once as I was screaming hanging halfway in the tub trying to keep Jeremy's head out of the water as he was having a seizure in the bathtub, that one was traumatic, I was so scared he was going to drown. Then there was the time we had just gotten home from Scripps and he went down in the garage, the was the day before we bought him his helmet. At the time our garage light bulb was out, so as we were getting out of the car it was dark, I told him I would open the pantry door so he could see walking into the house. I opened the door turned on the light and then I looked and he was going down, I screamed for Priscilla, his mom who was watching our kids, as I and ran around the car, it was dark again and I could feel the vibrations of his head hitting the concrete, her and the kids ran out at the tail end of his seizure, he was lucky as he fell, his head's initial hit landed on a gallon jug of water, bursting it, but softening the landing. I threw my hands under his head when I got there to keep it from repetedly banging the concrete. The scary thing was there was a circular saw blade about 2 inches from his head. Kenzie was so scared he was going to get cut. The next day at school a lady I work with asked how things were at home. I asked her why and she said that Makenzie said her daddy almost cut his head off last night. I hate that the kids have had to see so many of his seizures. Jeremy hates it even worse than I do. Anyways his seizures were becoming more and more frequent, one day in an 18 hour period, he had 11 of them. I think 7 of them were back-to-back which is what the Dr. here at Mayo says is extremely life threatening. Only 1% of epilepsy patients die from their seizures, but he said Jeremy is at the top of that list if we can't get these under control. He has prescribed rescue medications to use when the seizures won't stop and he has prescribed oxygen as well to use after the seizures because his brain is being deprived of a significant amount of oxygen. Even when he is not having a seizure he is always a ball of nerves, his anxiety is literally through the roof, but that is because his brain has taken such a beating. he has a hard time remembering a lot of things, and that is REALLY hard on him. I would do anything to take this away from him and help him feel good again. I have to say that after our last Mayo appointment, the dr. added an additional medication, which seemed to help a bit. We were shocked when almost 4 days went by without a seizure, it was such a blessing, he really feels like he is going to be healed of this affliction one day. We are hoping it is sooner rather than later. He has been such a trooper through all of this. I have done my best to sheild his head, catch him when he falls and help him come back after his seizures, it has been a heartbreaking experience, but also one where I feel the Lord has been holding my hand, and helping me hold on to Jeremy. I have had many nights where all I can do is lay there awake and watch him to make sure he continues to breath. I have had to just turn over all of my worries and fears to the Lord and he has taken them willingly and let me know that no matter what happens in life, he is going to be there for me and I will be OK. I really feel that Jeremy is going to get better whether he ends up needing brain surgery or whether the Dr. finds the miracle medicine, I just feel it. I have to feel it, it is what keeps me going. I have avoided blogging much lately not only because I am incredibly busy with school and work, but because I feel like blogging about it makes it more real. Sometimes I just feel like it is a bad dream and we are just waiting to wake up. I feel horrible for my sweet husband, it is killing him not to be able to work, he has had to stay home since January. He tried to go in one day in February, but they sent him home and told him he couldn't come back until his epilepsy was under control. That was so hard on him. I am mainly journaling this for my children to read back on one day in the far far future, but I know that a lot of people out there have been praying for Jeremy and I just want to say thank you from the bottom of my heart. Also to my angel mother, she has come down since February every week to stay with Jeremy while I have had to be at work. She knows that I have to work as much as I possibly can right now. She has helped me more than I can ever say, she is so tiny, but has been able to help keep Jeremy from rolling off the couch/bed. Oh and Jeremy has basically stayed mostly in our room and kept to himself, but everytime his seizures come, our dog alerts my mom who comes rushing in to help. My dog literally goes bonkers, barking, running to us, it is such a blessing, and to think I was not happy when he came home with that dog from the pound. I was so wrong, she may have needed a home, but we sure needed her. OK I am rambling and rambling, I guess that is what happens when you are in a hospital with nothing else to do. I will try and update this daily while we are here. Thanks again for all the prayers.
Pictures this year made me a little sad. I always buy one picture for the frame, even if they are not my favorite, but Skyler's picture this semester just looks so different from his previous picture. I can see the stress and sadness in his eyes. I decided to put this picture behind his old one because it just makes me sad to look at it. To anyone else it may seem fine, but I am not seeing the happy Skyler I am used to seeing. Hopefully as Jeremy gets better and when he is out of the fourth grade things will change. He and his teacher are constantly butting heads. He is also getting in trouble a lot at school for playing in the rocks and dirt. He did throw some rocks though one day, not at anyone or anything, just tossing them. I don't think it is that big deal, but since they told him he can't, he had to get punished. Let's see, we have had in school suspension and a week of shoveling rocks during recess because of it. Man, it isn't like he is saying bad words or bullying someone. He is just lonely on the playground and so he plays in the dirt. Sometimes it is a little hard working at the same school your kids go to because you pretty much have to grin and bear it. OK that is my vent session for the night. Sorry the scans kinda bite, but at least they are in there, oh and Jeremy scanned my pictures in too, I just look at it and laugh because I am posing the same way as my kids, and I look like a total dork!