Wednesday, August 5, 2009

{Kade}


We've had some crazy, emotional days but we are back on our feet and things are for the most part back to normal. I know a lot of you know bit and pieces of what happened...so here is the whole story.

Kade's seizures started out of the blue, no fever or anything. Tuesday around noon I was running around with the kids running errands. Kade feel asleep in his carseat, and when I went to get him out at the post office he was in a really deep sleep (strange for him) and didn't wake up when I carried him inside to mail a letter. I remember thinking that was strange, and when I saw the line was long at the post office I just turned around with the kids and put them back in the car. When we got home 10 minutes later he was awake and acting normal. Although I thought his behavior had been unusual for him, I just chalked it up to him being really tired because it was almost naptime.

The next morning he woke up at his usual time, 6am. Cody got him a bowl of cereal, and he was eating it in his highchair. Cody was in a different room, and heard Kade making a weird noise. He went in the kitchen and saw Kade chewing with his mouth even though there wasn't anything in here, and making a weird noise. He called for me and I came running. We kept saying his name, but even though his eyes were open, Kade wouldn't look at us, his eyes were locked. I pulled him out of his chair and he went into another deep sleep. Cody ran upstairs and got Rhett and Ethan up, and we drove to the ER. By the time we arrived there he was awake and acting normal.

We were put in a room quickly, and after they did his blood pressure and checked his temperature Kade started throwing a fit. He screamed for at least 2 hours, probably 3. They said that was normal behavior after a seizure for a child. They had to draw blood twice, and tried to put in an IV but he pulled it out. My parents came to get Rhett and Ethan, and my Dad and Cody gave Kade a blessing. I wish I could say he stopped screaming after that, but no! Cody drove home to get Kade's blanket, and 5 minutes after I gave it to Kade he threw up on it (and me). After asking if they had washers or dryers (no) we decided to wash it in the sink with hand soap and then Cody took it out and layed it on the hood of his car to air dry. It worked...you do what you have to do when you are desperate!

They wanted to do a CAT scan, and were going to sedate Kade since he was freaking out so much. 15 minutes before the test, he fell asleep, and stayed asleep for the scan. What a blessing. A few hours after the test (which came back normal) they told us we would be transferred to a children's hospital in Mesa. They were going to take up by ambulance but we signed some forms so we could drive him ourselves because at that point we didn't think he would be having more.

We got to Cardon Children's Hospital around 4pm. Cody left to get back home around 9pm since he had a coffee club the next morning he couldn't miss. That night at 10:30 Kade was just about to fall asleep and he had another one. Afterwards he went to sleep, and woke up Thursday at 6 am. About 10 minutes later he had another seizure, his worst one, a grand mal. They did an EEG that morning, and let me tell you it was not easy holding him down screaming as the technician put the electrodes on his scalp. After they were on he did great laying and watching a cartoon. They wanted him to go to sleep, so I said a prayer and another little miracle happened, he fell asleep just when they needed him to. As awful as the hospital stay was, I did feel the Spirit so strongly, and knew the Savior was helping Kade as he had to go through his seizures and lots of tests and pokes. At 3pm he had his MRI, and the anesthesiologist sedated him for that. At 4pm when he was in recovery after the MRI he had his 5th seizure.

About an hour later we were back in his room and the neurologist finally came in. He had reviewed his tests. The MRI was clear, there were no infections, tumors, or any signs of anything that would cause a seizure. The EEG, which records the electrical signals of the brain showed some abnormalities. There were two areas of his brain where there were neurons firing abnormally. He was diagnosed with Idiopathic Epilepsy, which is a broad diagnoses given to those who have two or more seizures for unknown reasons.

The neurologist started him on Keppra, a medication that should keep his seizures under control. He may still have them occasionally, especially when he gets a fever. The hopeful part of this is that there is an 80% chance that he can outgrow this. Best case scenario would be that in 2 years he can get of the medication.

He hasn't had another seizure since he started Keppra. The side effects are more dramatic the first week, and we have noticed he seemed dizzy and was more clumsy, running into things. Today has been a great day, he seems like my normal Kade. We are praying that Keppra can work for him, it's one of the few that doesn't have liver damage as a side effect. Keppra can cause behavioral problems, loss of coordination, dizziness, clumsiness. It makes me nervous, but I feel like he will be protected and pretty soon other than two doses of medicine each day our life can be back to normal.

We have had so much support....so many thoughtful calls, texts, e-mails, dinners, flowers, presents for Kade....we feel so lucky to have so many people who have made this process so much easier. Love you all!!!

19 comments:

shannen said...

Our prayers are with sweet Kade and your family!

Tiffani said...

It is so good to hear that he is doing better. I'm so sorry you've had to go through this Brooke. We hope and pray that things will continue to improve. Lots of love to you and your sweet family!

Anonymous said...

Oh wow! How scarey.... We will be prayering for all of you, and give Kade an extra hug!

Michelle Ashton said...

I am so sorry you guys have to go through this. I think of you guys daily. You are all in our prayers. Bless his sweet soul. I hope this takes care of it for you and that things continue to improve.

Brianne said...

I'm so sorry for everything you and your family have been through! Please know that you are all in my prayers and thoughts. Please let me know if there is anything I can do to help!!

Jesmyluk said...

I am so glad you are all on the road to recovery. We have been praying hard for you all and will continue to do so. I know you have many, many friends & family all around you but if you ever need anything... :)

Shel said...

We are just thrilled that the medicine is working. You are one tough mommy to go through this with him. What a blessing to have him fall asleep all the times he did...I know they feel it is more dangerous to put the kiddos under...he was truly watched over. I LOVE the blankie story! Way to be efficient! Did your clothes get washed in the sink and hung on the car to dry too? =) JK! Only You would look so fashionable in a hospital gown if needed!! We love you guys and are still keeping you in our prayers!

Claire said...

Oh my gosh!! Nicole had told me a little bit about what Kade had been going through, but reading your post had me in tears! (An easy thing to do these days... lovely hormones!) Your poor little guy. I'm glad to hear that he is doing better these days and that the medicine is doing its jobs. You'll be in our prayers.

Lori said...

I'm so glad to hear things are better. It is always so scary when your children are sick. It times like these we are so blessed to have the gospel and the power of the priesthood. But it sounds like you already know that.

Becca said...

Glad things are starting to look up. Luv Ya!

Jessica P. said...

I'm so happy that the meds are working!! You are in our thoughts and prayers, thanks for sharing!!

Locamoniqua said...

I'm glad to hear that the medicine is working for Kade. We are sure glad to hear that all is going back to normal! We want you to know how much we love your family and pray for you.

Mark and Jessica said...

Wow, what a scare and how frustrating to hear that word "idiopathic" I'm glad the meds are working and will keep you in our prayers.

Karla said...

Oh Brooke, I am so sorry to hear about this. You and your sweet little boy are in our prayers. We are thinking of you and hope and pray that this medication will be what he needs. You are very strong and I know like you said the Lord is aware of you and your family.

Krazy Kobels said...

How scary! I am glad the meds are working, hang in there!

Arianne Pearce said...

Brooke- what a trial! It is so scary when something (anything) is going on with your child. I am so glad to hear that everything is under control and we will help pray too that he can out grow this. Thank goodness you have such a strong testimony and you are such a great mama to be there for him!

Shannon said...

We love you. So glad he is better.xoxoxo

Malie said...

Wow Brooke. How scary! I'm glad to hear things are starting to get better. Hopefully this will be something he will outgrow.

Tanner Fam said...

When Nathan was in the hospital, I had to hold him down while they performed some procedures on him...one of the absolute worst memories as a mother, it goes against every fiber in you NOT to rescue them. Tough times. Love ya and hope you know you can always count on me if you ever need anything.