I am a single mom raising a son with autism. 21 years ago, I read "Autism: a permanent developmental disability requiring lifelong care for which there is no known cause or cure". In that moment my world shifted. Today more than 3.5 million readers have shared in our journey through this blog as I have detailed our 21-year journey of grief, joy, disappointments, successes, lessons, strategies, personal challenges, frustrations, fears all as they unfolded- day by day.
Friday, July 16, 2010
Four Days in the Hospital - Day One Seizure Saga Cont.
Day One: We arrive at the hospital and within an hour Nicky is wheeled off for his MRI and EEG set up. Thank god we don't have to wait around for a long time because he's hungry and frustrated which has not been conducive to me sitting and filling out admission forms or keeping him calm. It's quite a site, I chase Nicky, fill out a line. Hold Nicky, fill out a line. Grab Nicky before he get's that bag of chips from a kid, fill out a line.
I'm relieved when a nurse approaches and says "We are ready for him. Will he stay in the wheel chair?", I said "Sure" not thinking a thing of it. They roll out of the room, head down the hall and BAMB!!! Nicky's spots a rack of videos and he flies out of the chair! The nurse looks at me, mouth open, chin dropped, stunned, as if you say "Idiot! You said this was no problem." and all I could think was, I chould have said "Yes, unless we pass some video's or DVD's and in that case he will be overtaken by superpowers".
It took five minutes and three male nurses to get a screaming Nicky back in the wheel chair. My guy knows how to make an entry!
We arrive in the MRI waiting room and reality hit Nicky...he's gonna get his head wrapped! He starts to cry and yells "No head!, No head!,No head!" referring to the fact that he know's the electrodes are about to be glued on his head. I'm doing my best to calm him when the anesthesiologist and his assistant arrive asking if we are ready to get started. Unified we drag Nicky's flailing body onto the gurney. The Dr. turns to me and says "I am using a sedative called Propovol and he is going to go out fast, so don't be afraid". Ten, nine and he's out. Wow, Michael Jackson used this at home!.
An hour later the MRI was done and Nicky was rolled into the recovery room, where while still unconscious the EEG electrodes will be glued on. The nurse asked me to wait in the surgery recovery room. She'll call me when it’s time for me to come in. They want my face to be the first one he see’s. I like that. I feel strangely out of place. All around me are families waiting to hear if their loved one is out of surgery and stable. I feel oddly like I am using up space that is needed for someone else because I am to only waiting to see how my kid did getting electrodes glued to his head! The time is passing really slowly and unconsciously I've begin to look sad and serious to fit in. Finally the nurse calls me, and even though Nicky was not being operated on, I was just as relieved as anyone else in the room.
Nicky is about to wake up. The nurse is great and she fires off "He's doing great that Provovol is a wonderful drug". I fire right back "Yeah...if you're not Michael Jackson". I mean really, this can't be for home use, not any home. She looked at me shocked. I continue to talk to the nurse and as I am touching Nicky’s head and he begins to wake up. There he is! I feel so happy so relieved. Nicky wakes up, they check his vitals, all is well we are ready to go to the room. She calls the biggest man on staff to accompany us to our room. That's when I realize she had been alerted to his earlier wheel chair escape and upgraded him to a high risk transport. He was groggy, so I wasn't too worried. WRONG AGAIN, we get about a hundred feet away from his room and I spot the enemy, carts full of videos!
Before I can say a word a partly conscious litle boy turns into the incredible hulk who's only mission is get the video's. My semi conscious 12 year old wants Blues clues and he will not be denied!. We struggle to keep Nicky on the gurney as he becomes hysterical, calling out the names of two random video's. Then after all the chaos of the day, when I am on the edge, God intervenes. Of all the video's in the world the two he had to have, the two video's he was screaming for, calling by name were actually miraculously on the cart. He grabs them, and he is instantly calmed like a baby with a bottle. I go back to breathing.
Now it's time to settle into his room or shall I say our room complete with roaming web cam that will watch our every move. He get's the bed and I get the "bed chair". He is hooked up to a monitor and tethered by cords and an IV. My assignment; to keep an overactive 12 year old boy who is awake and alert, calm and in a bed, while tethered to a 4 food cord for 24 hours a day for 3 days. Not just any 12 year old boy but one that jumps up and down constantly and know's there are video's right down the hall. Wish us luck.
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My sympathies! We had to do that - without the roving camera, and with very atypical seizure symptoms! I swear, by the time we were done, I hated the woman's voice on the phone who kept calling and fussing because I forgot to turn the camera in the middle of an issue (3 am in a granmal!), or bitched when we went to the bathroom, out of camera range. Crappy equipment, really crappy set up, couldn't see a tit on a boar hog - even tho the electrodes said he was having seizure after seizure. She didn't see textbook, therefore he didn't have any!
ReplyDeleteHope you have better luck than we did!
I feel for you. I hope all went well. I just came from the dentist appointment from hell and as you said God intervened. After craking the little glass mirror thingy they out in her mouth, almost breaking the Dr's finger with her hand, scratching dadd's biceps and having to be helled my four of us she got her cleaning done teeth checked and NO CAVITIES! Thang God I don't think we coulda done a filling w/o knocking her out. As the staff and the Doctor put what freakish strength for a 7 year old little girl. Fortunatley they all had a great sense of humor and managed to win her over with balloons and her ultimate favorite stickers (Elmo). I can't imagine 3 days of having any child hooked to electrodes much less one of ours. My prayers are with you.
ReplyDeleteMy thoughts are with you; we had to do a 72 hour video EEG with my little one who was then four last summer. Not fun, not at all. I was so glad when the test was over. Hope all goes well.
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