When I last wrote, Cannon had finally come out from under the medicines used to relax him for the hooking up of the EEG. The night before Day 3 was a bit tough. He was up at midnight due to the fact that his diaper leaked. So, I had to clean him all up. Change his diaper and clothes. Which included cutting his shirt off! (I brought him several button up shirts for the days he would be hooked up but he only has 3 button up ones. So, I brought him in a regular shirt with plans to change him when we were ready to start the procedure. Well, I forgot and no one caught the mistake. So, he was stuck in the one he came in. I know it is silly but cutting off his brand new Gap shirt was painful for me. After being puked on and now sustaining diaper leakage……there was no choice in the matter, though.) We also had to change all the sheets and blankets. He even soiled his special blanket from home but thankfully not his beloved Curious George. He got really awakened while this was all going on so it took him a while to go back to sleep. Then, he awoke again at 3 a.m. and talked to himself some but mostly stared at his hands for about 30 minutes. He was up at 5 and the day begun. We didn’t have anything really scheduled today so we just did our own thing. We painted a couple more pictures, did some new puzzles Child Life brought over, put stickers in a Thomas the Train sticker book, colored a page in a Charlie Brown coloring book, read lots of books from home, and watched a couple of new Veggie Tales videos. I marked 3 staring episodes with my special button before noon, one of which was very typical of the spells we see. The typical one also occurred while a Child Life Specialist and Social Worker were in the room. It was obvious to each of them even before I said something that this spell was what we were there to document. (No worries in regards to the Social Worker friends. The hospital has them act as a support system and liason between you and the staff when you have a child with chronic medical issues and hospitalizations.)
Soon after, my mom and Townsend arrived to say hi and we ate lunch together in the room. Afterwards, I took Townsend down to the cafeteria for a treat. He decided on a cookie so we each had one. He cheered loudly for me when I finished mine because he is Townsend and he is hilarious. (“Yay Mommy! Good job! You finished your cookie! Yay! You’re such a good eater, Mommy!”) Everyone around us got a good laugh out of it as well. Then, we went by the hospital library and got a couple of new books for Cannon (Dr. Seuss’ “If I Ran The Zoo” and another book called “If You Give A Pig A Party”). Of course, Townsend couldn’t resist playing with the interactive wall and train that you have seen in previous posts. He starts talking about them the minute you pull up in front of the hospital. When we returned, Mom and Townsend left cuz it was nap time. Cannon and I spent our afternoon doing more of the same. Along with making letters out of modeling clay and rolling a bus back and forth forever!
Mark came to visit after work each day and I would shower super fast and spend a few minutes in the Meditation Room praying and reading my Bible. When bedtime came, I was determined Cannon was going to get a good night’s sleep. So, I gave him a big old bear hug and snuggled with him all night just like that. (Which is also why you got no report from me at the end of Day 3. I didn’t want to move for fear of waking him.) He slept fantastic! I did notice some slight twitching in his sleep so I noted it but I am not too worried. It didn’t seem super abnormal. Day 4 began with a plan. I begged the docs to unhook him at 2 in hopes that he could be rewarded for all his “toughing it out” by getting to go to his 4 o’clock swim lesson. We all agreed and set this as our goal. So, after a breakfast of banana muffins, coconut yogurt, and raspberries (all brought from home)……we set out to fill the next few hours with fun before it was all done. We split time between playing with the ipad, making letters (lots and lots of letters) out of modeling clay, and writing and reading words on the Magna Doodle. We probably watched a video or 2 in there as well.
When 2 o’clock rolled around, I was relieved. Except that the hardest few minutes were upon us! He was going to be awake for this part of the procedure and we had to remove all 27 leads. Thank goodness they come off easier than they go on but sheesh! It was no walk in the park! The tech began by unwrapping the bandage. Then he used a solution that smells absolutely awful to unstick the glue. Cannon fought and screamed “Help me! Get me out of here! Ouch! Help me Mommy!” Ugh! Dagger to the heart! Two nurses held him as best they could so I could just whisper soft, sweet words to him and try to keep him calm. Yeah…..well…..that didn’t work but at least we tried. When the last lead came off and everyone let go, he let out a huge sigh and sat down looking exhausted. But, then of course, he asked to go the playroom. His favorite spot in the hospital that he hadn’t gotten to lay eyes on yet in the 4 days we’d been there. I gave him a good shower first. And boy did he need it! His hair was and will be impossible for a while. The glue does not come out easily. You are advised to use non acetone fingernail polish remover to get it out. And let me tell you, it is not easy to get near a child with hyper sensitive sense of smell with that stuff. Usually the best we can do is just wash his hair 3 or 4 times every time he gets a bath and it is usually gone in about a week.
Before we left the hospital, I spoke with the Neurologist. He said that they would review all of the data collected and have a report finalized within the next couple of weeks. He would also speak with our Neurologist and relay his findings to her. He said that as of right now, we did not find anything of great concern and could consider keeping him off of the seizure
meds. Yay! That was our goal! To see if we could get him off of them and see if that could make a difference in his tummy. Now, we will wait and see! We consult with our surgeon next week to hear the results of the 2 tests he did. Thank you all so much for all of the support, kind thoughts, and love given to our family during this “tougher than most” week! We are so strengthened by it all! God Bless!
Oh……and yes……….he made his 4 o’clock swim lesson! And he had a wonderful time!