Sunday, May 31, 2009

Long week for us all....




We have been in the hospital with Hannah since Tuesday. We are in the epilepsy monitoring unit trying to capture Hannah's seizures on EEG. This is necessary to determine if she can have brain surgery. Apparently her triggers include stress and increased activity level. These are things we don't have while laying a bed eating all day!!!! She has not had any big seizures while we have been here. It is very frustrating. We feel really stuck because there are really only two medications left for us to try. Neither of them look very promising. One works for one type of seizure she has and the other medication helps another type of seizure. But neither one are supposed to work on both!!!! ugh. We are looking more into the VNS (vagus nerve stimulator). There are mixed opinions among the doctors about this treatment. Both the medications and VNS have about less than 5% chance of having control of her seizures. This is why we were really hoping surgery would be an option for her. None of this leaves a very good feeling.
Blitzen has been doing spectacular!!! He acts like he has been doing this his whole life. The doctors and nurses have been so impressed (although we would be happier if he would have something to alert to!!!). He has been on the job comforting Hannah when she is upset. He lays with her in bed and just goes with the flow. He has really helped Hannah be more positive through the hospital stay.
We think we are going home tomorrow. In the morning the doctors will discuss what the next step will be. They don't really feel like there are too many options anymore. Again, not a good feeling!!!
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Tuesday, May 5, 2009

Off Meds

Hannah is officially off her seizure medication. We are doing this hoping to induce seizures and catch them on EEG. We are still at home, which is scary, considering how bad her seizures could potentially be. As soon as she has a couple a rough ones, we will be admitted to the monitoring unit at Children's Hospital.
Up until today, we didn't really see anything significant. However, the latter half of the day at school, proved to be a rough one. She had a seizure (possibly more than one), to which Blitzen alerted to. Yay!! He will be working overtime the next couple of weeks. Hope he is rested up!!! This all seems so cruel to do to sweet Hannah, but it is the only way to see if she can have surgery. If we can get these on EEG we will have all the testing completed and the team can meet and make an informed decision. FINALLY!! "Thine will be done."
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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....