I walked the halls looking at the faces of all the Doctors and Nurses that passed by, wondering if one of those minds held the key to the lock that took my boy from me and left me with so many questions. I walked the halls on my way to sedate my boy, place electrodes on his head and HOPE he has a seizure. HOPE he HAS a seizure. I never wanted him to have one before, never! But today, I was hoping beyond all hope that he was actually going to misfire and have the very thing I dread. And he did. BEFORE the electrodes were on. We missed it by 40 minutes. It was the first time that any medical professional had seen one and for that I was somewhat grateful, but saddened all the same.
Our decision to move back to Utah was validated in spades the last two days. It was the ONLY place were we could have gotten 2 EEG's in 2 days, the only place where 5 nurses held him and cuddled him and tried to comfort him. And the ONLY place where a very kind Doctor took the time to explain to a worried Mom about Precedex®. Dex is a sedative that mimics sleep. Very mild, as far as sedatives goes, and essential for a precise view of the brainwaves our boy creates. He needed to be sedated because, as sweet and easy as he was the first two times he had EEG's, he WAS only 3 then and 5 is a whole different ballgame.
On December 2nd at 7:00pm we began the sleep deprivation. I was concerned it would be a battle we would lose and he would run headlong into deep, peaceful, sleep. But he didn't. We played music loudly and Tay helped by shaking him and screaming at the top of her lungs. In an enclosed car...it wasn't pleasant. At 10pm, Mom and I took him to WalMart thinking it would be easier to keep him awake with the bright lights and noise. And hey, I can Christmas shop so: Win Win. WalMart worked. A little too well. At 12:15am we headed for home. At 12:25 we were home, at 1:00am I was begging him to go to sleep. At 1:15 he complied.
Glenn's job was to wake him up at 5:15. He woke up at 7:00. Oh well, he is used to 12 hours of sleep so he was pretty deprived. But he was happy. Too happy, too energetic. K, that worked against us. At 10:30am we got to the hospital and heard: your appointment is tomorrow. Snap! How did I do that? The wonderful, kind and sweet lady said the most spectacular thing: Wait a minute and I will see if they can get you in! What? Cool. We'll wait. And Bug paced and ran the halls and I talked to some nice ladies and eventually we were called in. It was amazing.
Bug does NOT like small rooms. DOES NOT. So when we had to hold him down to get the electrodes on, there was a great wailing and moaning and gnashing of teeth. I thought he did fairly well, but it was a battle. Once the electrodes were on and the room was available we laid him down. And he got up. I laid down next to him, held him in my arms and he screamed at me and tried to get up. After changing parents and about 40 minutes I called no joy and asked for sedation.
They called the Sedation department and, well, Bug had a cracker. *A* cracker, 3 hours before so he couldn't be sedated. To be so close and miss it because Daddy was thinking his Boy would be hungry since Bug refused breakfast, well it pissed me off. I believe my comment was: 'Well thank God all those emergency surgery patients were smart enough to not eat for 12 hours before they got in the car accident'. The room was quiet...except for Bug. I heard: 'They don't want him to aspirate anything. ' I said: 'A cracker? His own spit is worse'. And then I apologized and told the VERY nice nurses and techs that they were fabulous to get us in and I really did appreciate it more than words can express. And then something amazing happened. We got an appointment for the next morning WITH sedation. Glenn and I were surprised, no, we were stunned! Stunned I say! We got the instructions and headed for the car, stunned.
In the car, I looked at Glenn, he looked at me and he said: A fucking cracker! We laughed and Bug played quietly with his Doodle Pro. We thought he would sleep. Shows you what we know.
Today, I was again in the Hospital walking its halls heading to Pediatrics. I hate going to Ped's in Hospitals, I spent some time there as a kid and I easily imagine all the heartache in the place. And I also imagine the hope, but mostly I imagine the Mom's and Dad's who resolutely sit by, helpless to intercede in the battle their child wages. All they can do is be supportive and strong and pray. A lot. I know how those prayers go. Too many prayers for too many children that should be outside running and playing and getting dirty but instead are hooked to machines and spending Christmas in sterile rooms. I looked at my boy holding my hand and I felt the same way I felt almost 6 years ago when I saw him the first time. Awe, love and fear. I adore this boy. He is is father and he is perfect to me. He is a handful and I would not trade it. Ever. But I must have answers, and I must find a way to ease these seizures.
There are some parents who would argue: It is who he is, accept it and live with it and make him comfortable, this is normal to him. We have accepted this is who he is, we have to put locks on the outside doors that he can't operate or can't reach, and we do it and we don't complain. But, when he wakes from a night of 2 or 3 seizures and he paces and cries because he is aching...people forget that ALL the muscles in his little body constrict. They tighten, as tight as they can, for a minute or two and then they relax only to do it again few hours later. By the look on his face, we know he hurts, physically hurts, we give him Ibuprofen and hope it helps. We may never know if it does, he may never talk and I accept that. BUT, I must do all that I can to alleviate the pain I see in his beautiful face almost every morning. This is my mission! So I placed him on the bed and answered all the questions and watched him slowly start to get upset.
I smiled when he was upset, only because I know what will happen next and I like to watch people, especially women, react. I am cruel, sort of. When Bug gets enclosed, he will reach for and/or grab anyone he thinks can help him escape. Once he secures him/her in his very strong grasp, he will kiss and then tug. It is hysterical. True to form, every woman in the room, two BYU nursing students, Susan (the sedation nurse), Linda (his nurse) and the very wonderful lady that helps him adjust to being in the hospital (forgive me, her name escapes me), all got hugged, tugged and smooched. He makes people smile, even when he is grumpy. That's my boy.
After a great conversation with Dr. Osguthorpe, Bug was given the IV. I say that matter-of-fact-ly but...it was interesting. By the time they were ready for the IV, all of the people in the room had felt his strength. *I* am used to it and can muscle him back, but they were concerned. SO...I held him, Dr. O held him, the two BYU students held him and Linda had his arm, needle poised precariously above it. I joked; he has good veins. Linda agreed, to which my response was: You're welcome, they're mine. Everyone giggled and Bug wailed. Now, with 4 adults on him, he stood up. No joke, he STOOD UP, and I took him back to his knees but had to let go of one arm to do it which he promptly used to grab at Linda. She brushed it away as if she were a linebacker protecting the quarterback, she's that good. Oddly, the needle didn't make him jump, the catheter did and we all struggled to keep him still. I knew I should have climbed on the bed and pinned him but...no matter it's done.
A few minutes later, as I was holding him, trying to comfort him, he slowly started to quiet down and then, gently drifted to sleep. This was the part I was dreading. I had to leave the last time I watched him sedated. It made me too sad for some reason. But I couldn't leave ever again and I didn't have a choice anyway, Glenn had to go into work. It was so gentle the way he drifted to sleep, I was surprised and relieved. They called for the EEG tech and ten minutes later I watched him start to lock up.
'Oh, seizure.' I said quietly. And three nurses ran to his side but I was there first. Linda called out time and I held him, reassuring him and waited for it to pass. I turned him on his side so he didn't choke on his saliva and watched him start to blink. It wasn't bad. Not full T/C. Dr. O came in a few seconds later but it was over. He asked how long. I said: less than a minute and asked Linda how long it really was: 45 seconds. Damn, I'm good. Damn...I don't want to be able to gauge time like that.
We may have missed it but at least we learned a few things:
1 - The sedation did NOT hinder his brainwaves enough to suppress the seizures (sad but good)
2 - His brain was in pattern for seizure activity. Meaning we would get realistic and a probably VERY accurate look at how his brain acts when he seizes without actually seeing the seizure itself. (good and good)
Glenn came in as they were placing the electrodes. And Bug slept deeply, and contently with no more seizures. He did have sudden all over spikes, which is fairly normal for a youngster, but nothing that anyone there went: Wow, look at that. At one point, he woke up slightly and stretched, pulling 5 electrodes off in one swoop of the hand. They had to stop and reattach them. I couldn't help but giggle. Even asleep he wanted nothing to do with it. They tried a strobe light to see if it would kick off a seizure. He barely reacted to it. When it was over, he did NOT want to wake up, he was too content. We all tugged on him and petted him and called his name...and he slept. 30 minutes later, he woke up...pissed. 20 minutes after that we walked him down the hall to the amazement of the nurses. I guess most kids aren't that stable that soon after. He has GREAT balance. He was a little lethargic for a few hours and didn't eat much for the rest of the day, but he did fine really.
So now we wait until the 19th. On the 19th, Dr., Vincent will decipher the EEG for us and we will start medication. I am scared and hopeful. I have watched my happy little boy disappear into silence. I have pounded on that wall between us and I am beginning to see the small cracks appear. It won't be too long before it's shattered and he begins to understand, and be a part of the world around him. And I will no longer dread the dark but welcome sleep as renewal and a break from the madness of active toddlers. Seems simple and yet..still feels so far away.
