Monday, January 18, 2010

(Kade's lovely turban of wires covered by gauze that he wore in the hospital for his EEG)

My last post on Kade left out quite a few details...while the kids are napping I'll try to fill in some of the gaps!

Last July (2009) was when Kade had his first seizures. He had 5 in 3 days, and we were in the hospital where an MRI was done and an EEG (a couple of hours long). The MRI was clear, the EEG showed abnormal activity on left frontal lobe. We met with a neurologist there, who became Kade's neuro for the next few months, who prescribed Keppra. That worked great for a few months, we didn't see any seizures. The ones he had in July were tonic clonic, the kind you picture when you hear seizure. Stiff, shaking, etc. Then in November we noticed he had two different kinds of seizures. Very short, 5-10 seconds. It was as if he would zone out, we'd call his name and he wouldn't look at us...then he'd snap out of it. He also was doing these little body jerks. After we told his doctor about these strange behaviors we learned the zone-outs were called Absence Seizures and the jerks were Myoclonic Seizures. Myoclonic seizures are bad for cognitive development so he doubled Kade's Keppra and told us to give it two weeks. It worked at first, but after 13 days they were back, and more frequent than other. Other medication was added, but things continued to worsen. And that brings us to my last post, where he began having seizures almost every minute.

His first 24 hours at Phoenix Children's Hospital was pretty rough. The IV team tried four times (both hands, both feet) to put in an IV which resulted in four blown veins. That equals lots of blood, a traumatized three year old, and an exhausted mom and dad who were trying to hold him still while comfort him at the same time. He did earn a Nerf Gun in the process though, which was a lifesaver in those coming days! The staff was great, in the six days we were there he was given the gun, about 10 stuffed animals, Buzz Lightyear, a book, Mr. Potato Head, and a few other toys I am forgetting. He made out better than at Christmas :o)

After the EEG was hooked up we learned that he would be on it at least 24 hours (turned out to be 6 days). The room has a video camera in it, and a nurse is constantly watching him on a video at her station to detect seizures. We were given a button to push when we suspected a seizure, so they could look at the time we pushed it and the activity on the EEG. There was also a sensitive microphone in the room, so for 6 days our every action and word was recorded and observed....yikes!! He was not allowed to watch TV or Movies because it's hard to detect his Absence seizures if he's staring at a TV. At night we had to sleep with the lights on so they could watch him on their screen (luckily near the end they let us turn a couple of them off). He couldn't have his blanket, which he is VERY attached to, because they didn't want anything covering his body when he slept so they could see what he looks like when he seizes. Not fun!!

The first night also was fun when he threw up four times. I guess that is one perk to having the lights on, I didn't trip on anything as I grabbed the vomit bucket and ran to him. For some reason he would go crazy each time he threw up, 3 out of four times grabbing the bowl and dumping the vomit all over him, the bed, and me. I felt bad for the nurse and CNA on that shift, they had a fun time changing sheets and cleaning our room all night. Luckily I had brought several sets of clothing. It was the flu, we found out the next day that both his brothers were sick at home that night as well.

As I said before the next two days were hard, filled with lots of seizures and medications not helping. Things were getting very serious and we were worried he was going to go into a long seizure which can result in brain damage. The doctor was talking about what the next step was, either giving him steroids to stop the seizures or putting him on a Ketogenic Diet, which can be effective for many children who don't respond to medications. The Ketogenic Diet is a high-fat, low carbohydrate diet. It may still be in our future, but is very hard to stick to, especially with other children in the home.

It's funny how your perspective changes so quickly. In July when this all started, as hard as it was we were hopeful that in a few years he would outgrow it, and the only side effects of Keppra were impulsive behavior and irritability. We were desperate to avoid the stronger seizure medications that can cause liver and pancreas damage. However, in the hospital everything changed and we were forced to look at the big picture and trust in doctors to use the strongest medications in order to bring our Kade out of that horrible condition he was in. Now he is on two medications, which so far have been working very well. He has only had one seizure in the 7 days we have been home. We were told it would either slightly sedate him, or cause him to be hyper and irritable. He is hyper and irritable....which is difficult to deal with at times, but manageable. I hope it fades a bit with time as his body becomes more adjusted to the medication. For some reason the medication is not in liquid form as the Keppra was, so we have to crush the pills and give it to him twice a day in food. It tastes gross, so two times a day we have to pin him down and basically force him to eat it.

As I wrap this up, I fear it sounds very negative. I don't mean it to be, but it is what it is and although it is hard we will push through and hopefully make this as easy as possible for Kade. We'll meet in a week with his neuro and schedule the 24 EEG and MRI, and hopefully he will be pleased with his progress and the tests will give us more good news.

We do not know what is causing these seizures, he has been given the broad diagnoses of Idopathic (unknown cause) Epilepsy (2 or more unexplained seizures). He in some ways has traits similar to those with Doose Syndrome (Myoclonic-Asatic Epilepsy), but his doctor is not ready to give him that diagnoses.

http://www.doosesyndrome.com/index.html

Once again, thank you so much for all the support. A big thanks to: Shannen for a yummy meal, the Serros Family for several meals dropped at our doorstep, Lesli sending balloons and a monkey in the hospital, the Steere's for balloons, Cody's mother for flying down to help, Becca, Shelby, and Jennie for watching my boys and fun presents for Kade (poor Jennie watched Rhett for me when he first had the flu and he threw up 3 times at her house), my sister Brittany for coming to my house very early in the morning for several days to get my kids off to school and watch them when they had the flu, Dustin and April for helping with the older boys, Kaija and family for the sweet cards and stuffed animal, Mark and Laraine for visiting, Suzi for letting me shower at your house, all ward and family members who fasted for Kade, and thank you thank you to all other friends and family for the sweet texts, e-mails, calls, and offers of love and support!!

8 comments:

Twisted Sweeties said...

I'm so sorry! Good luck in the upcoming weeks! I hope it all goes well. Poor Kade!
Maggie

Tiffani said...

AUUUGGGGHHHH!!! I can't imagine not being able to watch movies/TV in the hospital. That is the only thing that keeps my kids and ME sane. You poor woman...four tries for an IV. That is the worst. My heart just breaks for you guys right now. Hospital like stinks. We love you and will be praying for sweet Kade.

Michelle said...

I know that there are no words that can help you right now, just know that you guys are in our prayers! We love you guys!

Herbert Family said...

My heart also breaks for little Kade and everything he has to go trough in this process...including you and Cody. Being parents is hard enough and then to add scary stuff like this to it. There are defiantly no words that can help make it all better. But please know that I would love to help with anything you guys need. And you guys are always in our prayers. Luv ya!

Boley Boys said...

My heart goes out to you and all your boys. It's horrible to have to hold your child down only so the doctors can inflict pain--no matter how good you know it is for them. I'm sure you're still going to have lots of doctor visits and would love to watch your boys any chance you will give me. I'm so sorry you're all going through this scary, challenging time! My prayers are with you all.

wittygal said...

We pray for you often. I am so sorry! Please let me know what I can do.

Barlow said...

I am so sorry that I didn't know. I wish I could have helped at all during that time. Your little guy is definately in our prayers. I know we don't know each other very well but I would love to help in any way that I can, at any time.
Becca Barlow

Jenna said...

He is such a little sweetheart. I was so happy to be able to join in the ward fast for Kade. I hope it brought some peace to your heart as only the Lord's spirit can.