Friday, January 29, 2010

Seizures and more

When Jude went to bed last night he had racked up a total of 14 seizures through the day. I say 14 because those were visibly violent to me, and we could count them. Although, he also kept opening and closing his mouth which is an indication he is continuing to seize, even though we don't see the spastic moves. Jude used to register seizures activity on his first EEG's even when we didn't see anything going on. He is having so many seizures that he is beginning to lose his smile again, and he is rarely laughing. So last night I laid him to bed hoping he wouldn't have any seizures through the night, but he did. If you remember Jude's Depakote was decreased at his last hospital stay. Mike and I believe the medication level needs to be increased again. As I stated yesterday my major concern is that Jude is now losing oxygen, and may need emergency intervention with some of these seizures. That is why the MDCP nurse is suggesting a nurse for Jude during the day. I doubt we will get one because he doesn't have a G button, but they are looking into it. My guess is that if Jude is losing air the neurologist will prescribe oxygen to be on hand if needed. This is all just assumptions though, and guessing where I may not need to guess.

When I look at Jude's MRI the seizures make sense to me because of the clefts in his brain, although they are still hard to watch. No one wants to ever deal with seizures especially in their child. I am positive that the neurologist will eventually want to do another EEG, but we are hoping to put this past next weekend so Emily can have her time she has looked forward to. Speaking of hospital stays, I received the information from my insurance company on Jude's last stay in December. He was there for 5 days, and the total bill to just THEM was over $42,000!!! That isn't even what they billed to Medicaid. That is equivalent to many salaries in America, which makes me wonder what people do who don't have insurance. America needs reform in the amazing cost just to receive treatment. I am SO lucky that we have good insurance, I am not sure what we would do without it. I am also thankful for the skilled doctors, and I know they deserve good pay, but that just seems so extreme. My guess is this was over a $45k stay.

On a more positive note Emily competed in the battle of the books last night. This is my understanding of the whole competition. Basically the kids at her school were given 9 novels to read since the beginning of the year. They were then tested, and put into groups based upon their tests. They then battled between themselves until there was one group standing, and it was Emilys. Those six kids went on to the district championship last night, and after three rounds Emily's team took first place! They were super excited, and I was so proud. There is a picture below of Em with her medal.
Also, I was thrilled to come home yesterday, and see that Jude had gotten his new Tomato chair. He cannot keep his head up in it for long, but it's still nice. Emily wheeled him all over the house last night, and that was really the only time he smiled. It made me happy.

The neurologist just called and wants to see Jude next week. I know Mike has a crazy busy schedule already next week, but this will over rule therapy.


Midwest Mommy said...

You amaze me.

Kaidence's Mommy said...

How do you do it? We never knew anything about seizures until we were on vacation and my nephew had 2 of them. He had never done so and it was awful. I can still see his face when my sister threw him in my arms wanting me to help him somehow. All I knew was what the hospital does by placing them on there side. I was terrified, luckily we had Kaidence's oxygen because he needed it. That was a blessing. Anyhow, that situation has really bothered me. I cannot imagaine watching your child do that all day long, day after day. I am sure it just wears out the little guy. I hope that you get things under control quickly. Sending prayers your way!

Katy said...

The worst part about the cost of health care is taht the insuance companies get a bulk discount that the rest of us don't qualify for. Doesn't seem fair to me. . .

Jenkins said...

Oh seizures are not fun. Our little guys deals with them too and recently became a problem with his oxygen flow. We now know the EMTs and they know what to do and trust us to tell them what to do.

We are looking into the ketogenic diet to help with the seizures.

We have the same tomato chair and LOVE it! His older brothers push him all around the house.

Candace said...

Oh Jenn,
I was hoping not to have to see this post....I feel your pain so much and I wish I could give you a big hug! Sending one across the blogispere! I would definatly get on that neurologist about the oxygen thing.