My husband, Gary, and I were able to get away this week for a few days. I liked to call it our "Getaway for Two." We went to Holmes County, Ohio; Amish country. Exhilerating....Relaxing.....Renewing.....Refreshing........mmmm. Need I say more???
I really wasn't ready to come home. We rented a cabin. It was sooo beautiful. I could have lived in it forever. It was a much needed respite for my husband and myself. We enjoyed just sitting in each others' presence with no interruptions. We have another week of daddy being home with us. Time is going so fast. It is going to be very hard to let him go back to Iraq...
But, like most things, all good things come to an end....Hannah has been slammed with seizures the last two days. Blitzen alerted at school yesterday. My wonderful mother was staying with the kids while we were away. She was able to go to school and give Hannah her resuce meds. (Naturally there was a substitute nurse who had never heard of giving versed nasal spray, let alone administer it). My mom is a retired nurse so she was able to give Hannah her meds without a problem. She was decent the rest of the day. Gary and I got home around 6 pm Friday. By 9 pm, Blitzen was alerting again. This time I gave her oral diezepam. It worked okay and she was able to go to sleep. The night went well. She woke up this morning and was definitely "off." By 8:30, Blitzen was alerting again. More Versed. Didn't work too well today. We battled seizures all day today. Another alert at 3 pm. Another alert again at 6 pm. UUUGGGHHH!!! She was completely out of control all afternoon. She was aggressive, her speech was very slurred, and she was drooling. Nothing could console her or keep her content....With the last alert, I gave her Diastat. My hope was that it would "reset her system." My bag of tricks was empty.... It took awhile, but finally at about 8:30, she seemed to be herself again. Hopefully it will be a quiet night.....
I have no idea why we have had this increase all of the sudden. She went almost a week with no seizures. I really did think she was leveling off after getting settled in school. Maybe that is still the case. She could be getting sick. She always has an increase in seizures when she is coming down with something. I will be calling Dr. Neuro on Monday. He may or may not start her on Vigabatrim. Really not sure what he will do. We are still holding out for VNS surgery. We still haven't heard anything from the insurance company. COME ON ALREADY!!!!
Saturday, September 19, 2009
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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....
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....
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