All 4 Jake: August 4, 2008

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine

Tuesday, August 4, 2009

August 4, 2008

Today we finally get to leave the hospital! Yeah!

There were no findings, no results, no answers, but we could go home.

I guess in the car and signing the dismissal papers, I was just happy we were leaving and had no clue what we were in store.

Doctors are supposed to help you, give you answers, and talk you through the problem.

The only thing I really remember hearing was "We just don't treat seizures in inpatient."

I wanted to look at this neurologist, take her neck in my hands and literally wring it.

"yes, you have told me, you don't treat seizures inpatient! then make them stop!!!"

Saturday, July 2, 2008,was pretty tough, as Jake was already pretty drugged that previous night, in order to make the seizures stop. Then Saturday morning, he had to have a MRI.

This could have been the most miserable experience of my life. The techs were literally fighting with each other, I hear them yelling at my son to lay still, and it takes FOREVER!!!

They bring Jake to us and inform us they had to give him more drugs, because he wouldn't lay still. At this moment I was certain, his little body would simply shut down. He did not speak, sit, or eat for at least 16 hours after this.

The tears and the emotion that day, almost led me to pull him out of the hospital right then and seek treatment somewhere else.

Actually, I think Matt and I said we were going to do that, but at this point we were sooo terrified of big seizures, aka, tc's, we were too afraid to travel to another hospital with him in our car.

We were afraid of the unknown, as we still had not been educated at all about what was happening to our precious baby!

So Monday night, we were finally released from the prison, some call a hospital.

Jake had a great time when he was awake enough, sober enough and not seizing every minute. "til this day the kid LOVES hospitals and can tell you details about every nurse and every detail of every hospital he has been at.

My iv, this is where I get my meds