Beep, beep, beep....the alarm goes off.
It is 6am and time to leave for my son's brain MRI.
Exciting stuff, only, not so much. Sigh
I got everything ready and at about 6:40am changed my son while he was still sleeping and carried him to the car. In his sleep haze, he asked for his ABC music CD. Never misses a moment does he? So cute. We arrived to the empty parking lot and got into the waiting room. We signed in and waited for someone to come out with instructions. Once she did, we filled out all the necessary paper work and into another room we went. This one with all sorts of electronics and buttons my son wanted to touch. He did not know what to do, so he just paced back and forth checking out all of the equipment.
I handed the nurse the list of the 15 supplements and vitamins my son takes to make sure there is no adverse reaction to anything they will administer when combined with these. I got the usual questions as to why we give him this and that. I had my binder with me so this time I was able to give perfect answers.The two nurses and technician all looked at me like most people look at me when I talk about any type of intervention, wondering if I have lost all my marbles. I assure them my marbles are great, all there and shiny too! But really, I explain that we see one of the top holistic, licensed doctors and that at some point we have to trust someone to help our child move along.
They attempted to take my son's vitals, but as usual other than weighing him in (39lbs!) they can't get anything done without him screaming and fighting them all. To administer the versed to calm him down, it took three people to pin him down to the bed and a bed strap to get it done. The nurse slowly administered it with a syringe in his mouth. Not so fun what you get used to doing these days. The second time to pin him down was to apply the IV. That was another session of adults pinning down my little boy. He screamed using all of the words he knows to make us stop: "all done, bye bye, stop, stop it." Completely heartbreaking. By now, the versed took over and he started to get groggy, though not nearly as much as he needed to be. They wrapped a diaper around his hand to prevent him from pulling the IV off and my husband carried him outside. They have this huge trailer with the MRI machine inside. A big, scary, intimidating machine. My husband placed him on the bed and kept a tight hug grip while they administered the next drug: Nembutal. They had four individual doses of which he ended up requiring only two. They gave him one at a time and saved some in case he woke up during the procedure.
It was frightening, but in a weird way cute to see him fight and slowly give in to the drug because it was like he was drunk. He kept talking slowly and slurring all speech. My sweet boy. He finally fell asleep and they laid him down and strapped him in. They put a sheet over him to make sure he was not cold and asked us to wait in the front lobby. I thought the time would go by slow, but it thankfully did not. Before we knew it, 30 minutes later, we were called in to the recovery room. He laid there out of it completely in sleepy land. The nurse administered 180ccs of IV saline fluid to push the drugs out of his system. He slept through all of it. After finally getting him to drink 3 ounces of water, he was released.
My husband carried him to the car and buckled him in. Luckily, it was only a 12 minute ride. Because he was so out of it, his head was completely bobbed down most of the ride home. We got there and carried him into bed. I got prepared for a 6 hour period of laying in bed with him as he came out of it. Boy was I wrong! Ten minutes after we arrived, he bolted up on the bed and attempted to jump off and run to his room like he usually does except he had no strength in his legs and arms yet and we had to keep holding him off as he fought us off. In his mind, he was strong enough. The nurse told us this would happen, but I had no idea it would be so bad. By the end of 20 minutes he was back to his old self! Just a little more drunk looking. The next 2 hours proved challenging as he did not want to be shadowed and insisted on running all over the house. He fell twice, but luckily nothing bad, just slip and slides. I was completely exhausted. Once we knew he was not wobbly anymore, we finally let him be. Completely exhausted I tell ya.
I wanted to note two things that happened almost right after we got home. As I carried him to the playroom floor and was lowering him to the floor, he looked at me with his sleepy eyes and said "Hello, hello mommy." Huh? This was huge! He has never greeted me. The extent of him greeting me is usually a big grin and running towards me. This time, he deliberately made eye contact and greeted me. I was in shock. I said "Hi baby, how are you? How do you feel?" but of course, no answer. He was in and out of his world and the drug world that he still had in his body. Minutes later he noticed the bandage on his hand from the IV. Usually, he calls bandages "stickers" and he is terrified of them. Taking one off means more pinning down or letting them fall off on their own.This time, he noticed, looked at it and slowly draped his arm over my leg followed by grabbing my hand with the bandage free one to signal me to take it off. I did, thinking he would pull his hand back and he did not. In fact, when I finally peeled it off, he felt the area where it was like he was now relieved it was gone. Mystery number # 2. Why the sudden lucid moments? Was it the IV ? Did that liquid running through his body help in any way? Was it just coincidence? Am I over analyzing this? I think there was a 3rd one, but cannot recall right now. Mommy brain.
At around 4pm, the phone rang. They called to say the MRI results were normal. Really? Normal? That was it. A 15 second call for results. I wish I could sit there with the neurologist and scan every inch of that MRI. I fear they just see this as routine, scan it briefly and push them aside. Not that I want something to be wrong, but it seems so casual that a brief phone call ends the entire MRI issue. I have requested copies on disc to perhaps get a second opinion. I have heard of some of the white matter on the MRIs signaling metal toxicity. Will have to look into this. Can't ask the neurologist because he says he does not believe in magic, as in, don't come to me with any other theories that are not ABA, ST and OT intervention related.
So on with our detective work in the search for my baby's recovery.
Just this afternoon while in the car, he pointed to the DVD screen where the Care Bears movie was playing. He rarely points. could this be another gain?
The Florida Panthers hockey game was the place we went to last night. A friend invited us to their corporate suite. Perfect! It is a decent sized room with a closed door, bathroom and just 3 steps below there are several rows of seats to watch the game in a private balcony. My little one can run all over the place, climb the seats and watch without bothering anyone. Except for the grape, he found on the floor and threw at a fan sitting below- oops-sorry sir!
