Saturday, January 23, 2010

 The long tedious medical post...

In two weeks K and I will make the one hour drive to the hospital where our K and JD were born and I will go through the process of admitting K to the pediatric epileptic clinic for 5 days. You know that feeling of dreading something and greatly anticipating it...? No? Well, if you do, then you know how I feel. It's not going to be an easy few days for us, but our hope is that this will finally be the process which will help us determine why K's current anti seizure medications are not doing what they are designed to do in his body; stop seizure activity. Let me be honest here - in the past 6 months, as these seizures have begun to show up for K, I have struggled. I had been ultra pleased that although his EEG results always showed high potential for seizures his whole life, we had never seen one. Not one. Not ever! And it was quite the miracle. Doctors were amazed - and our little boy amazing his doctors has always been a very encouraging element in our journey of raising this dear {but always a bit complicated} child. And then in July - for some reason which is still a mystery to even the most educated of doctors, he had the first seizure we have ever witnessed. At the time we didn't know what was happening, because it wasn't what one would think of as a typical seizure. It was just some trembling, rapid eye movement, a little confusion. We were on our way home from Iowa and had been in the car for about 10 hours. We thought maybe he was dehydrated, over tired...? We brought him in to the ER later on that night and received no answers there. He was fine by then and the ER docs sent us home. Since then he has had an "episode" on average of once a month. Some months he has had two. They are getting more "organized". It has been explained to us that his brain now has "practice" in causing a seizure. Grrreeaatttt!!! Just the kind of practicing one wants their children to do, huh? The last one he had was a couple of weeks ago and it scared this mama... It was pretty much what one would think of as a classic seizure. We were eating supper and all of the sudden he got a panicky look in his eye. He said "No, no, no!" - He knew it was coming on, and that pretty much broke my heart. I don't know what he feels during these seizures. We have been assured it doesn't hurt him and will not cause brain damage. They are not grand mall seizures, they do not involve violent jerking or any thing life threatening, but for us they are still very daunting. Dave held him until it was over. I prayed. For alot of things, but mostly that we would have some way of figuring out why it was happening and that we could prevent this from becoming a part of our normal. The very next morning we got a call from the epileptic clinic, which we were on a waiting list for (yay God!). He will go off all anti seizure meds the night before he is admitted. While he is there they will try things like sleep deprivation to try to induce a seizure. Yes, we are going to go to great measures to bring on a seizure. There will be 24 hour video and EEG monitoring while he is at the hospital and through this we hope to be able to pin point exactly where in his brain the seizures are being activated. He will have electrodes all over this head, and a few on his chest, during the duration of his stay. Dave and I had to be very creative in coming up with a schedule to have one of us with K at all times. Because of Dave's job (silly little detail...) our other 3 sweeties, household responsibilities, Jay's preschool... you get the picture. I think we finally have a tentative schedule mapped out involving a couple days off from work, alot of help from Dave's mom, having Dave's sister "on call", a rigorous process of talking to several different people at the hospital to get permission to bring baby Kai for part of the time (you'd think no one had ever asked if they could bring their full time nursing infant to the hospital before. They really didn't know what to say to me at first and finally, slightly begrudgingly, they agreed that I could bring him if I did so for the least amount of time as possible). Okay, so I know this was kind of long and I may have rambled a bit (and of course for some of you this was repetitive and old news...) but this obviously has been on my mind alot and I really covet your prayers for our family. The planning, the details getting worked out, the other boys as they deal with mommy and daddy taking turns being gone, my selfishness, as this 5 days happens to have my birthday in it. (Oh my *gag*, that sounds incredibly self-absorbed of me in light of everything going on with K...), and of course some specific prayer requests for K. We would really appreciate prayer for K's comfort during his time in the hospital. Since he is getting to the point where he is aware when a seizure is about to begin and he seems to experience some panic from those feelings, it makes it hard for us to pray that he has a seizure. Also, having electrodes all over his head and chest tends to be some what uncomfortable to him. In addition to that - just trying to keep a 7 year old calm and occupied for 5 days and nights in the hospital… yeah, 'nuff said. Our biggest, and likely strangest, prayer request is that he will indeed, have a seizure while he is at the hospital. That is the hope of this whole plan. We want him to have one - to see the EEG and video evidence of what is happening inside, and to be able to make a very personalized medication plan to stop what is happening. It will hopefully also give us some direction in making some decisions regarding his daily activities etc. Thanks friends. I feel a little tired after writing this. We know that none of this is a surprise to God and that he treasures our son even more than we do. Your prayers mean so much to us!

14 comments:

Katarina said...

I will definately be praying for K and your family.
I pray that everything will go smoothly (from bring Kai to the kids at home to K having a seizure to finding the answers that are needed).
I'll also be praying that you will have a wonderful, blessing filled birthday regardless of where you are or what is happening on that day.
*hugs*

Jessi said...

Praying that a seizure happens so you can get the answers you need. I had a random seizure when I was 15 and had to go through the very same testing - trying to bring a seizure on. It didn't happen and I haven't had one since but I do know that it was scary and not fun and I hate to think that your son has to go through that. Breaks my heart.

Thinking of you all and praying!

Rachel @ Unexpected Blessings said...

I'll be praying. Thanks for the long detailed post. I have heard alot of this info before but it helps to have it all laid out together to get the full picture. Love you!

Redhead Mommy said...

1. Absolutely I will be praying for you.

2. Do you have a sling for Kai?

3. If you don't, would you like to borrow mine? It's very nice and comes with an instructional DVD. If so, I'll send it to you on Monday so you can get used to it before you need it.

Redhead Mommy said...

oh yeah, and I DO know what you mean about dreading something and anticipating it at the same time. although you have me beat by far! hang in there, you are covered in prayer and in the Lord's hand.

Rebecca said...

we'll be praying for your precious son and you & your family. and the doctors, too!

Amanda said...

wendi...you most definitely have our prayers. i only wish i was closer...because you know i would happily help with your others...much, much, much love and prayers for your peace in the coming days anticipating this.

Rach@In His Hands said...

Wendi, I wish I could hug you SO tightly right now. This is SO much for you all to go through...but praise Jesus that HE is with you. And His plans are perfect.

Praying, dear friend...

une autre mère said...

I'll definitely be praying for you guys this week! Thanks for opening up and sharing this. I can't even imagine what it must feel like to watch your child have a seizure and have to just watch helplessly. What a comfort to know that God knows every detail of his condition, even if the doctors don't, and He has a perfect plan for K.

Little Candle said...

You and your family are in my prayers. So many warm thoughts and hugs going out to you.

Amy@My Front Porch said...

I will absolutely be praying for you. Would you mind if I shared your request in a general way with our small group tonight? If you'd rather I not, just let me know!

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