Have you ever gone on vacation someplace beautiful or unique and you come home all excited and tell people about it? You show all your friends and family the pictures and tell all the stories. But, in the end it just isn’t the same as actually experiencing the trip yourself. You know that after all the pictures and descriptions you give your friends and family, they don’t really KNOW what the trip or experience was like…because they weren’t there. They didn’t experience the sounds, smells, wind and all the things that really make an experience unique and memorable to you.
I’m finding that the same idea is applying to all our medical experiences with Luke. Until you go through them yourself…you just don’t really know. All the pictures and descriptions just aren’t enough. Luke’s therapy, his MRI, his muscle biopsy, and his eye surgery were all experiences that are hard to describe. Even experiences like trying to get a urine sample from Luke are things that are better “lived” than described. I’ve gone through that experience twice…both experiences were different…and neither one very fun.
Well, after yesterday we have a new “experience” under our belts. The EEG. I can’t imagine this is a fun experience for any parent of a small child. But with Luke…the boy who doesn’t sleep in the car no matter how long the drive, and doesn’t sleep with other people in the room….I was dreading this experience. Luke had to be sleep “deprived”, which meant he could only sleep from midnight till 4am the morning of the test. Because I was scared that Luke would still not sleep during the test…I even cut his nap short the day before. Instead of 3 hours…he had a 1 ½ hour nap. This made for a very cranky boy on Wednesday night.
Thankfully I have a wonderful husband who helped me with Luke. He kept Luke up till midnight and let me go to bed around 9pm. They watched some Veggie Tales and then I heard them playing some basketball and things. This meant I didn’t get to a deep sleep till later on, but at least Luke was happy and awake.
Then 4am came, and I got up and let my husband sleep. I woke Luke, which took some doing…he did NOT want to get up. Once up he stayed cranky for me…but I bribed him with teddy grahams and juice. We had our breakfast around 5:30am and left for the hospital around 6:30am.
Luke did really well until the nurses wanted to put things on his head. Luke is just too curious and has to see what is going on. Well…you can’t see the top of your head….so one nurse tried to keep him happy and held his head, while the other measured, marked, and then glued all the wires onto various places on Luke’s head. Luke was doing pretty well with this part until he decided to trick one of the nurses. Luke was playing really nice, smiling and everything….then all of a sudden he reached up and pulled off three wires!! The nurse dubbed him a “stinker”…which I agreed with, and I told her he was probably laying there planning, just waiting for the “right” moment to get those wires.
After the wires were on, they took some wide gauze and wrapped Luke’s head. It went around his head like a Turban and then they went under his chin as well. In the end it reminded me of a mummy….only Luke eyes nose and mouth were seen. I wish I had my camera.
Then I lay down with him trying to get him to sleep. I even remembered the Randy Travis CD (if you remember this is one of best ways to calm Luke in the car). Luke cried for the first 5-10 minutes….then we laid there in the dark listening to Randy sing. Luke fought sleep for a good 40 minutes. Then finally he drifted off. He was only asleep for about 5 minutes before they called an end to it all. This all seemed like a lot of work for 5 minutes…but at least he did go to sleep finally!!
Then after they took all the wires off there was all this glue in Luke’s hair and it had a red coloring to it as well. It looked like he had been playing with some red paint. The nurse used a washcloth and got most of the glue out…but the glue ended up being smeared all over turning in the glue into a “styling gel” of sorts. The nurse even took a comb through it and made cute little spikes in his hair, so he would look “presentable”.
After we got home, around 10:15am, I gave Luke an early lunch and then a bath to get his “gel” out of his hair. Then I laid him down for a nice long nap…and I found some zzzzz’s as well. My wonderful husband took Thursday off so he could take care of our baby girl…and they were off with the grandparents “fishing”….so the house was nice and quiet!! So nice!
Luke got a nice long 4 hour nap before I woke him up, and I found that I didn’t wash his hair good enough. Luke’s hair looks so funny, there were three areas where his hair was gathered together making it look like someone had come along and chopped his hair down to his scalp in those areas or something. Later that night Luke got his second bath of the day, I finally got the glue all out!!!
I am so grateful that the EEG went better than I thought it would. It was still an experience not easily forgotten.
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