Thursday, June 18, 2009

we keep on keeping on.....

Hannah is still having some rough days full of seizures. A few nights ago, she had two tonic seizures. I would have given rescue meds with one more, but fortunately, she stopped. The next morning, though, was very rough. She woke up having seizure activity. She was extremely argumentative and combative. Her speech was slurred. By 12:30 pm Blitzen alerted and I gave the new Versed nasal spray. Within 10 minutes she became calm and quiet. Within 45 minutes she fell asleep. I rested too, hoping she would be a different child when she woke up. She slept one hour. Much to my dismay, when she woke up she was even more combative. I had bruises to show for it. She was completely out of control. This went on for 3 hours. I was just about to head to the ER. At that point, I wasn't sure if she was having seizures or a reaction to the Versed. I still am not sure what it was. After 3 1/2 hours, she finally started to calm down. ugh.
I called the neurologist the next day. They aren't sure if it was a reaction or not. They want me to try it again to see what kind of reaction she has to it.
The staff at Children's Hospital are working on getting the VNS approved through insurance. Once it is approved, we will meet with the neurosurgeon that will put her VNS in place. Hopefully she can have surgery by the end of the year.

1 comment:

Danielle said...

This is danielle...trevor's mom...from trevor's hope

would you mind emailing me? tanzie213@yahoo.com

Thank you SO much for your comment...and sharing your blog...I'm sappy today & reading through your posts has me all weepy! Funny how emotional things like seizure alert dogs make us seizure mommies! Such a beautiful gift for our kids!

...danielle

Beautiful Hannah...

How this journey started....

Hannah was born prematurely at 34 weeks gestation. She was a relatively healthy preemie; initially having difficulty maintaining body temperature and needing to grow. She weighed 4 pounds 9 ounces at birth. When she was four months old she began to drool, non stop. We were told the first year she was "teething." At 18 months old, we really started searching for reasons of why her shirt was always soaking wet. We saw various specialists who always sent us to another specialist, saying "everything looks okay." She spent years in oral motor/feeding therapy to help her not to drool. It wasn't until she was four years old and in preschool that we started to get some answers. Her preschool teacher commented one day that she wasn't reponding when her name was called. I took this information to her pediatrician who then orderd an EEG, "just to rule it out." Much to our shock and amazement, the results showed, she was having seizures. That is the day our journey REALLY began. Once she began taking seizure medication the drooling almost stopped completely. (She will still drool to this day when she is having seizure activity). Since then, it has been a roller coaster; countless medications and medication changes. She has never really reponded well to any medication.

About two years after she was diagnosed with epilepsy, the doctors noticed that her blood pressure was running high. After many tests, she was diagnosed with hypertension. We still are not sure why, but her cardiologist feels her blood vessels are thicker than normal.

About this same time, we also began looking into why Hannah was such a horrible sleeper. She would thrash, talk, move every which way, during her sleep. The sleep studies revealed that she has alveolar hypoventilation sydrome, which means she has too much carbon dioxide in her system when she sleeps. To help this, she wears a BI-PAP at night. This has been monumental in giving her more effective and quality of sleep.

Every day is a challenge for Hannah and our family as a whole. Blitzen has been an absolutely wonderful addition. She calms herself sometimes just by petting and loving on him. He has been trained in behavior disruptions and will sometimes be able to stop a meltdown from getting out of control.
It has been extra hard on the whole family since daddy is deployed to Iraq. He has been gone since January 09 and will gone until Jan 2010. We get to talk with him by phone and on the web cam; which is nice, but not the same!! Blitzen has helped to make his absence go just a little smoother....