Tuesday, March 30, 2010

Day One at Mayo, Let Me Start at the Beginning...




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.

9 comments:

Brenda said...

Allison,
I'm so sorry to hear about Jeremy's illness. I had no idea what you and your family have been going through the last few months. You are in my thoughts and prayers. I admire your strength and courage. Your children will always remember your strength and faith, you are a wonderful example.
Trust in the Lord.
Let me know if I can do anything to help you in anyway.
Thinking about you.
Sending hugs.

Love, Brenda

Sabra said...

Please, please, please keep us posted. Thank you.

The McEnaney's said...

I am praying for all of you...you are all so strong!

Devey Crew said...

Ali We are all praying for you and Jeremy. Skyler saw the pic of his dad said and it looked uncomfortable with all thoses wires.

Miken Harding said...

Ali, I'm so sorry. I can't believe that. We will definatly add your family to our prayers. I'm so sorry this is happening, but the Lord will definately give you and your family the strength to go through it all, and it WILL be okay. I'm moving back end of April, please let me know if I can do anything. I love you, hang in there and good luck.

Tia said...

Allison,
Thanks for sharing really it makes me feel guilty for complaining about the things I do- when I know you are going through this. I think it really helps all of us in some way when we share our struggles. We love you guys and are praying for you.
I have to agree that throwing rocks seriously - don't they have other stuff to worry about. I'll send Carter over there, then They'll have something to complain about.

Candice said...

We will pray that the doctors at the Mayo clinic can help him.

AudyCamp said...

Those 2nd & 3rd pics made me remember when Kaylea had that done. She had a few little seizures when she was younger (ended up just being febrile) but it was so scary! I can't even imagine what it has been like for you.

How great though for him to be in the care that he is right now...it must be a relief! How wonderful also for him to be experiencing this during this Easter season as he can reflect about his own resurrection some day with a perfectly healthy body!

Lots of Prayers & Thinking of you tons.

{{{Hugs}}}

Tina said...

I think you will be glad that you decided to write about what you and your family is dealing with. You will have a good record. I also believe it is good to let others know, so they can help you better. For some of us, all we can do is pray...so that's what we are doing!