Leeon and I have talked about how throughout our ordeal with Ben there are certain images that are forever burned in our memory....his first seizure...July 5th...a drop seizure in JoAnn's that threw him to the ground...a tonic clonic in the HEB parking lot...a tonic clonic in the bathtub...a tonic clonic at the park...and now our trip to the ER at Cook Childrens on Christmas Day...
The last time I blogged, it was Christmas Eve. That evening turned out to be a rather difficult one for Ben. He had multiple seizures during the night. We kept talking about whether we should call 911, call the answering service, or just take him in ourselves to the hospital and each time we decided to just keep waiting to see if things would improve with diastat and extra clonazapam.
He woke up on Christmas Eve and we had a wonderful morning together. He was a little lethargic and had a difficult time opening his presents, but he was thrilled with his new drum set!
We had a quiet morning and got ready to go to church for the 1:00 service. He fell asleep on my lap and had two tonic clonic seizures there at church. Our church family is wonderful. They prayed with us and encouraged us. When we got home he cried for a very long time. His body was just aching, but he finally got to sleep. Later, we went to my mother-in-loves and spent time with family.
As soon as we got home, he had a tonic clonic while awake. This was the first awake seizure he had in over a month. At this point we called the doctor. These were our options:
~ try a new med...but the pharmacies were all closed
~ keep trying diastat and clonazapam....but we had been doing that for 6 days already
~ wait it out and talk to Dr. Perry...but they wouldn't be in until Tuesday
~ take him into the hospital to get him 'loaded'...
We decided to take him in. I'm glad we did.
He had a tonic clonic in the car on the way there.
Leeon dropped me off at the ER entrance to park the car.
He had another one while I was seated - a paramedic picked him up and carried him back.
As soon as we reached the back, it seemed like there were 30 people in the room with us all frantically doing something while he lay seizing on the bed.
We answered a millon intake questions, breathed for a minute and the nurses went on their way getting the drugs ready and such.
Then he seized again. His oxygen level dropped very low and very fast and his head was tilted back in anticipation of intervention. They placed an oxygen mask on him, the seizure stopped, but he couldn't stop crying.
They gave him fosphenytoin in an IV. They wheeled us up to our room and he finally fell asleep. In the haste to get him here, we forgot his clobazam. This drug has finally been FDA approved, but it's not available here in the states yet. So this meant that Leeon had to go home and get it. He also picked up a few odds and ends and made a pepperoni/peanut meal for later. Poor Leeon - it was after 3:00 am before he got back to the hospital.
Really from here it's almost a blur...seizures continue, valsporic acid level is too low so depakote is given in an IV, seizures continue, more depakote given, seizures continue, ativan is given, depakote level is still too low, more given, regular depakote dosage increased, etc.
The doctor thinks that a new seizure has emerged. He's calling it a tonic seizure. Ben's arms stiffen and pull upward as if he's shielding his face, he appears "out of it" - not unconscious like during a tonic clonic, but unable to respond. They only last a few seconds. This is what the beginning of his tonic-clonic seizures look like. Dr. Perry told us once that tonic seizures usually look like the superman pose - arms extended straight and up in the air. I'm a bit confused about whether these new episodes are indeed tonic seizures.
At the very beginning of this journey, we were directed to the International League Against Epilepsy website. According to this site, "Nocturnal generalized tonic-clonic seizures, which may develop later, are another unfavorable sign. If tonic seizures appear, prognosis is poor." I told the doctor this and he said, "yes it is true that prognosis is poor but he was going to leave the conversation of prognosis to Dr. Perry, but it's good that I'm aware of the possible prognosis."
BUT!!!! There are a few things I'm sure of:
1. They may not be tonic seizures.
2. If they are tonic seizures, it doesn't change his diagnosis or treatment.
3. As someone told me - when you meet a child with Doose, you've met a child with Doose - that's how varied they are. No two Doose kids are alike.
4. I know that our God is greater than Doose.
So, we have to continue to focus on right now. We can't let our minds go down the road too far ahead of us. I have a magnet on my fridge that says, "don't fear the future - God is already there". We need to deal with what is actually happening and not what might happen.
Right now we need Ben to eat and drink more. We need him to continue to become more alert. We need his depakote level to stabilize. We need to go home...
We are so thankful for:
1. the Guidrys! Angie came to visit with us today and ended up driving all the way home with me to make some meals for Ben and then coming all the way back. I love this family!
2. Ben is trying to talk more. He is sitting up better and has better control of his body.
3. The seizures have been declining all day long.
4. He requested to go for a walk so we took him downstairs in the wheelchair for a minute.
5. The care we have received from our nurses has been great - we've had some of the same nurses each time we've come so it feels more familiar.
6. We have received so many messages of encouragement from our friends and family.
We are praying that:
1. Ben will be healed.
2. That his depakote level will stabilize.
3. The doctors will continue to have wisdom.
We continue to have hope.