Sunday, January 17, 2010

{Kade}

Hello everyone! It's been a long time since I updated this blog....I am way behind. As many of you know, Kade's seizures were increasing in December. His doctor doubled his medication, and when that didn't work, added a new one. At our last appointment with him, he said they would schedule an EEG within the next few days for him. Cody and left the appointment just feeling uneasy, as if he wasn't as concerned about Kade's high level of seizures as we were.

The next day, Kade's seizures worsened. He woke up Tuesday the 5th and was having seizures every minute (they would last about 5-10 seconds). After this went on for an hour, I called my uncle Jeff at 7:30am. The day before he had recommended a friend of his who is a neurological surgeon at Phoenix Children's Hospital. I called Jeff asking him if he would call his friend and tell him Kade's situation, so we would know what to do. Dr. Manwearing called us back, found out Kade's history and what was currently happening, then told us to come to Phoenix Children's. He said he was going to meet with a team of neurological doctors and eptologists who would get a plan together as to how to treat Kade.

When we arrived they hooked Kade up to a video EEG (electrodes glued to his head which record location and magnitude of brain activity), and he stayed hooked up on the EEG for all 6 days we were at the hospital. The first three days were very scary. Different combinations and levels of various seizure medications were used, and nothing was working. Finally on Friday we had a break through and his seizures were greatly reduced. The first three days he was having over one hundred a day that we could see, and hundreds more that are called electrographical seizures, unseen by the eye but recorded on the EEG. By the time we left on Sunday he was not having any seizures, but still was having too many of the electrographical seizures. We are hoping that in these next few weeks or days, the two medications he is on now will help reduce those further. He'll have a 24 hour EEG done soon to see if that's the case, and also an MRI.

Although this was one of the most frightening and heartbreaking times we have experienced, the good that has come of it is that now Kade's care will be provided by an amazing neurologist and eptologist. Dr. Buchhalter founded the Epilepsy unit at the hospital 3 years ago when we came from Mayo Clinic. He's the Chief Neurologist and we feel so confident in his expertise and passion to help children with epilepsy.

Thank you so much for all of your love and support. We have been home a week now, and have only seen one seizure, so things are loooking good. We are hopeful that his current medications will control his seizures and he can continue being the lovable, energetic, and inquisitive 3 year old that he is!

7 comments:

Locamoniqua said...

Brooke,

We are so happy to hear that Kade is doing better! I'm so glad that he got the best doctor. We will continue to pray for him and your sweet family.

Strong Family said...

Glad to hear Kade is doing better. We have been praying for him as a family. Please let me know if there is anything we can do to help. We will continue to pray for him. Hugs!

Rachel said...

wow, brooke, what a trying time! i am so glad to hear your little guy is doing better and that he's got top of the line doctor's working with him now. your family is in my prayers!

Rachael Jill said...

What an ordeal. I wish I lived closer to help you with whatever you needed. I'm glad Kade is getting the primo care that he is now, and I am praying for Kade and you and Cody.

Tiffani said...

Brooke, my heart just goes out to you. If only we lived close we could swap kids and help each other out while are other little guys are in the hospital. I'm so sorry you've had to go through all of this. It just stinks. I really hope the new medication works and Kade gets completely back to normal soon. And I hope you get a nap. I'm sure you're exhausted!

Jennifer said...

Wow, Brooke. I'm tearing up reading this. That must have been a very scary time.
What a blessing to have found that doctor. We will keep Kade and your family in our prayers.

Jen Christensen

Sam and Melissa said...

Awww, that breaks my heart to think about little Kade going through that. Even though I'm sure it's been much harder on you and Cody than Kade. Things will keep on getting better and better!