Tuesday, December 23, 2008
Monday, December 22, 2008
ABR, ASSR, and hearing test under IV Sedation
On Friday, December 19, Sadie had an ABR(auditory brainstem response), ASSR(cochlea processing), and hearing test all under IV sedation.
The day sucked. The weekend wasn't much better.
We arrived at the hospital at 9:30am. As usual, we head to the registration department so Sadie can be admitted to the hospital. She was given a hospital bracelet, we have to confirm her name and birthday because they are sedating her for the testing. Her little tummy was growling in the waiting room because she wasn't able to eat or drink before the sedation.
By 10 we were escorted to an exam room where her vitals were taken. The nurses, one by one, start to come in and ask us questions to get prepped for the testing and IV. The doctor comes who is monitoring Sadie during the sedation to ask more questions. Usually the same questions are always asked. I'm starting to feel like a robot answering... It takes 3 nurses, me at her head, and Bill holding her head, and the IV nurse to pin her down in the blanket burrito to get the IV in her hand. It is aweful!
She is given 3 doses of the sedation med each in 5 minute intervals. She finally stops fighting everything that is happening to her and she falls asleep while I rock her in my arms. I again feel overwhelmed at all the testing she goes through. Overwhelmed for her and for me.
Bill and I go down the hall to the cafeteria where we text our family that she is under sedation now. We were told the testing could take about an hour possibly an hour and a half. We quickly eat because I want to be in the waiting room the second she comes out of sedation.
After an hour, the nurse gets us from the waiting room and we rush the 20 feet to the small recovery area. Sadie is thrashing on the table with her eyes closed. Two nurses are attempting to calm her. It is near impossible. I take her in my arms and I can barely hold her. Finally, I have to sit and Bill has to sit in front of me so that we can both hold her together. She is acting like a caged animal. She is throwing herself back and arching so hard. The nurse is concerned about her reaction coming out of sedation and the doctor comes to say that some children do act like that. He says it may take two to three hours for her to snap out of it. The recovery nurse suggests we put her in her stroller because that sometimes calms children. We do as she suggests and we start walking laps around the testing area. By the second time around, she is interested in drinking her juice and munching a graham cracker. She has to do this before they will discharge her. We walk around a few more times and the nurse says we can take the IV out and go home.
She reminds me that Sadie is "drunk" from the sedation and because she is a wobbly walker anyway that we should keep a close eye on her. That turned out to be an understatement. We finally get in the car and Sadie is falling all over the place like a very intoxicated child.
We get home and Memaw is waiting for us, thank goodness Shelbi was still napping.
Sadie continues to thrash around and throw herself back in my arms. After being home about 20 minutes she throws up ALL of her juice and crackers. Lucky me, I caught most of it, so I didn't have to clean the carpet, just me. She napped for about two hours. For the rest of the night, I had to hold at least one hand to keep her from falling. The next day she remained grouchy and sensitive to being held. She threw her self back as often as she was held. By Sunday she was starting to get a little of her happy personality back. Today she is almost recovered and cheerful again.
Sad to say, the genetic counselor called and our insurance approved the UBE3a test for Angelman Syndrome so she will have to give blood again next week. Yeah!
The day sucked. The weekend wasn't much better.
We arrived at the hospital at 9:30am. As usual, we head to the registration department so Sadie can be admitted to the hospital. She was given a hospital bracelet, we have to confirm her name and birthday because they are sedating her for the testing. Her little tummy was growling in the waiting room because she wasn't able to eat or drink before the sedation.
By 10 we were escorted to an exam room where her vitals were taken. The nurses, one by one, start to come in and ask us questions to get prepped for the testing and IV. The doctor comes who is monitoring Sadie during the sedation to ask more questions. Usually the same questions are always asked. I'm starting to feel like a robot answering... It takes 3 nurses, me at her head, and Bill holding her head, and the IV nurse to pin her down in the blanket burrito to get the IV in her hand. It is aweful!
She is given 3 doses of the sedation med each in 5 minute intervals. She finally stops fighting everything that is happening to her and she falls asleep while I rock her in my arms. I again feel overwhelmed at all the testing she goes through. Overwhelmed for her and for me.
Bill and I go down the hall to the cafeteria where we text our family that she is under sedation now. We were told the testing could take about an hour possibly an hour and a half. We quickly eat because I want to be in the waiting room the second she comes out of sedation.
After an hour, the nurse gets us from the waiting room and we rush the 20 feet to the small recovery area. Sadie is thrashing on the table with her eyes closed. Two nurses are attempting to calm her. It is near impossible. I take her in my arms and I can barely hold her. Finally, I have to sit and Bill has to sit in front of me so that we can both hold her together. She is acting like a caged animal. She is throwing herself back and arching so hard. The nurse is concerned about her reaction coming out of sedation and the doctor comes to say that some children do act like that. He says it may take two to three hours for her to snap out of it. The recovery nurse suggests we put her in her stroller because that sometimes calms children. We do as she suggests and we start walking laps around the testing area. By the second time around, she is interested in drinking her juice and munching a graham cracker. She has to do this before they will discharge her. We walk around a few more times and the nurse says we can take the IV out and go home.
She reminds me that Sadie is "drunk" from the sedation and because she is a wobbly walker anyway that we should keep a close eye on her. That turned out to be an understatement. We finally get in the car and Sadie is falling all over the place like a very intoxicated child.
We get home and Memaw is waiting for us, thank goodness Shelbi was still napping.
Sadie continues to thrash around and throw herself back in my arms. After being home about 20 minutes she throws up ALL of her juice and crackers. Lucky me, I caught most of it, so I didn't have to clean the carpet, just me. She napped for about two hours. For the rest of the night, I had to hold at least one hand to keep her from falling. The next day she remained grouchy and sensitive to being held. She threw her self back as often as she was held. By Sunday she was starting to get a little of her happy personality back. Today she is almost recovered and cheerful again.
Sad to say, the genetic counselor called and our insurance approved the UBE3a test for Angelman Syndrome so she will have to give blood again next week. Yeah!
Saturday, December 13, 2008
Auditory Testing
So Sadie had her hearing test on Friday! It was fast and quite simple.
The first test was to see if there was fluid in the ear...normal.
The second test was to test the eardrum...normal.
The third test was a behavioral hearing test. In other words, the audiologist went in another room and spoke into one of two speakers to see if Sadie would look in that direction. Sadie did this for about 30 seconds and then got bored and didn't look over after that.
So, the next step...Sadie will have an "Auditory Brainstem Response" test. She will be sedated for about an hour through IV. They attach wires to her head and behind the ears to test her specific hearing and also to see if the brain is responding to the sound. During that time they will also do another test to see if her brain is actually processing sound through the cochlear.
So our questions are being anwered by more questions.
We are very grateful to live in a time where such testing can be done. It really is amazing how sophisticated medicine is today!
Sadie is such a trooper through all of this. She continues to be our little love girl and showers us with hugs and kisses constantly.
Friday, December 5, 2008
Monday, December 1, 2008
Testing
The EEG went as expected. She cried basically the whole time the tech was putting the wires on with the goopy stuff. 23 wires. First she mapped her head with a red wax pencil. After that she had to clean the area, then put the wire on with thick lotion so it would stick to her head. This took about 15 minutes. Finally, she wrapped her head in gauze so that all the wires would stay in place. She turned the lights off and played soothing Disney music. Sadie cried herself to sleep in about 5 minutes. The tech logged all of Sadie sleepy movements. She slept about 10 minutes. The conclusion to the test is flashing strobe lights of varying intensity. Strobe lights can trigger a seizure. Exhausted, we were home by 12:30.
Hearing test December 12
Hearing test December 12
Tuesday, November 25, 2008
Countdown to Tomorrow Morning's EEG
Sadie is having an EEG at the children's hospital tomorrow morning to see if she is having absence seizures (3-5 second staring spells). She has to stay up until midnight tonight and get up at 6am. She has to be tired for the test and take a short nap during the test. This will be her second EEG. The first was done when she was 14 months old following a febrile seizure. They hook about 20 wires to her scalp with glue to measure her brain waves. She will be strapped to a bed and we hope she will fall asleep for at least 10 minutes of the test.
Saturday, November 22, 2008
Angelman Syndrome Test UBE3A sequencing
Since the last post, I spoke with both the genetics doctor and the genetic counselor. The genetic counselor had to do some research on the test that Sadie had in July. She did in fact have the MECP2 test in July and they are nearly 100% certain she does not have Retts Syndrome. However, based on observation, she still exhibits charactaristics that are so similar to Angelman Syndrome. The doctor still wants to have the UBE3A gene sequenced on the 15 chromosome. There is a 1 in 1000 shot that she might have Angelman's. http://www.angelman.org/stay-informed/facts-about-angelman-syndrome/
Either way, we are starting to come to terms with the future. We are by no means giving up, we are just being realistic about the situation. The doctor says that no matter what, Sadie can live a happy life. We know this is true, but all the wonderful things that make a happy life are going to be different. Finding happiness through her eyes will be our goal and we are seeing things differently. Our acceptance is taking the pressure off in many ways to enjoy her and her life without all the pressures that other "genetically normal" children might face. We'll experience all that with Shelbi. Who can by the way point to 9 body parts at 16 months. WOW. We are blessed with love for both girls, but life will be different. A GOOD Different.
Either way, we are starting to come to terms with the future. We are by no means giving up, we are just being realistic about the situation. The doctor says that no matter what, Sadie can live a happy life. We know this is true, but all the wonderful things that make a happy life are going to be different. Finding happiness through her eyes will be our goal and we are seeing things differently. Our acceptance is taking the pressure off in many ways to enjoy her and her life without all the pressures that other "genetically normal" children might face. We'll experience all that with Shelbi. Who can by the way point to 9 body parts at 16 months. WOW. We are blessed with love for both girls, but life will be different. A GOOD Different.
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