It is about to get hairy, as the school year is getting underway. Besides me resuming my responsibilities as a special eduction teacher, Addison will be starting Kindergarten and Jake will be starting prek full time as well.
August 5th, 2008
We had Jake transferred to Children's Medical in Dallas.
Jake loved the atmosphere much more and was much more willing to cooperate with the nurses and doctors in this kid friendly atmosphere.
Jake LOVED the fish tank
The first smile I saw in over a week...needless to say I was a blubbering mess
They ran more tests and promised "tomorrow" we would go home.
However, tomorrow kept turning into another day, as his seizure types kept changing and/or increasing.
Finally, after 4 or 5 days taking up residence in downtown Dallas we got the ok to leave, but not without telling us:
"Jake's a very complicated case."
This did not make me feel much better, when taking this new child home with no nurses, iv's, doctors, and emergency care always on hand.
But, they did give us Diastat, the emergency medicine. I did feel MUCH better armed with this little weapon.
Right before we were walking out the door, Jake starts throwing up.
The nurse came in and advised us to wait a couple hours, let the doc check him out again and then we can go.
On the way home, Jake throws up in the car 2-3 more times.
We get him inside , cleaned up, give him his meds and the boy starts losing it again. He can't hold anything down, most importantly, he can't hold his medicine down.
So, Matt and I load him back up in the car and head to the nearest ER. Apparently Jake had picked up a virus at Children's.
The doc at the er gave Jake anti nausea medicine and another iv of his Depokote, so his little body can actually absorb it and we may be able to get some sleep.
( jakes littlehand says it all, in the er hooked up to the iv)
The next morning, we wake up tool around for a little, and Jake needs to go potty. I take him potty, not yet knowing what the heck a "drop seizure" was.
As I watch him going pee-pee, I witness him lose all muscle tone.
He falls straight down, chin hitting the edge of the commode and his little head flinging backward onto the tile floor.
Yep, here goes another ER run.
8 stitches and a cscan later we are able to go home.
Little did we know this would be the first of 12 sets of stitches in the same place in the next year.
LOng story short...hopefully.
Our pediatrician is adamant that we need to get back in with our neurologist a follow up appt.
Our peds. office even sets up the appt.
The day of the much anticipated nuero visit, I get a call 3 hours before.
They tell me I can't come in today.
We set up another appt. for the following day, however at their other location 1 hour away.
I load Jake up, who at this time is having HORRIBLE side effects of the new meds taking over his body, in Dallas rush hour traffic and head out.
We get to the appt. and are surprised to be the only ones in the office.
After waiting nearly a hour, our nuero walks in.
The first question she asks is:
"Why are you here?"
Dumbfounded, I respond that, as if she needed to be reminded, that our pediatrician recommended, we see her right away, as Jake is still seizing uncontrollably and it is pretty scary, and it may make us feel better, if we could control them.
She then informs me, she can't see us anymore.
I am absolutely dumbfounded!
I muddle up, trying to fight back, tears, rage and that growing lump on my throat, Why?
She tells me that there are "too many people involved!"
I tell her " too many people? this is my sons brain, his life!"
She informs me she knows and that's why she can't see us, BUT she will see us for 30 more days and order blood tests for tomorrow because Jake is still having so many seizures we need to see if there is room to increase his meds.
I walk out, feeling like a lost puppy, carrying home my dying cub, with now hope in the world.
I cried, bawled, and screamed the whole hour home.
However, I was a little encouraged that she would be our doc for a couple more days so we can get these meds figured out.
I drag the kids out of bed early, early the next morning, so we can be the first people in line for the blood work.
We were not the first, or even close to it.
However the other patients saw how much Jake was seizing, and it probably freaked the out a bit, so they us go ahead of them
I was supposed to hear back by 12:00 about the results, so I knew if I could Jake more of his afternoon dose or not.
I waited, and waited, however the call never came.
I called and left message after message to the neurologist office and never ever heard from them.
So here I am , with a seizing boy, no neurologist, no new meds. and no where to go.
I tought I would never make it past this point in my life, however through the support of family and friends and the great Lord above we are here today. This is an example of the unwavering support that has been shown to us during this very trying time! A letter from a friend:
I just wanted to take the time to point out to you and Matt how far you have come. It is soon to be the anniversary of the beast's appearance...that's 365 days that you've made it through. 365 breakfast's, lunch's and dinner's... 8,766 hours...52 weekends. Amazing and remarkable. You have still eaten ice cream, you have fished, swam, rode bikes, got up on ski's, tubed, strolled for Epilepsy, raised money for charity, gone to the beach, hung out with friends, birthday parties, girl's nights and have shown me and countless others... what Epilepsy is. We are all more aware. We are smarter. We are passionate and we all realize the tremendous need for more research and awareness. It is contagious, this desire we all have... to get Jake better and all of those that suffer.
You should be proud of your marriage, proud of your families and proud of yourselves, for I bet you none of you thought you were going to make it through ONE day. Now you can say you've almost knocked out 365 of them.
I love you both and your sweet family and I am glad that I am on the "list" of friends you turn to when you need something. Don't ever cross me off...etch it in stone, if you can.
God Bless~ Christine