Saturday, May 3, 2008

My Middle Mann - Part VI

From where I left off...

....His development was pretty boring for the next couple of years. Honestly, he didn't change much.

Until about 3 months before his 2nd birthday.

He got a little sick one day. A little more uncomfortable than usual. He never seemed completely comfortable, but this was definitely different. He couldn't keep anything down. Actually, it was so bad that I couldn't even wipe his face with a damp cloth without him throwing up.

I was completely at a loss for what to do.

So we went to the doctor.

He was diagnosed with extreme dehydration and admitted to the hospital for fluids and observation. It was the strangest thing to me. Strange, because when they admitted him, they ordered a CT scan of his head. I really didn't understand that, but the lack of clarity only lasted a short time.

His shunt had failed.

There was no reason for this. It just happened. I'd been warned that it may, though I had no idea what to look for. But in a few short hours, I learned what his symptoms may look like if it ever happened again.

He had a second brain surgery, though he didn't look nearly as alienesque as the first time. He didn't have any physically altering symptoms, specifically head swelling. He did have a complete shutdown of his systems. There was the obvious digestional shut down, accompanied by a loss of visual function. He was completely dehydrated. In fact, when they tried to use a catheter to get a urine specimen, his little bladder was completely empty.

He came through surgery flawlessly. Woke up and acted mostly like the little man I'd come to know, and life just went on.

Did I mention that I knew what it might look like if it happened again? Yeah, it did. 2 months later.

Apparently, the first time, it got plugged up because the pressure valve that was originally used enabled for significant decompression of the ventricles. So much so that the brain tissue was able to, over a period of two years, completely block the shunt's flow. It was gradual, but when the blockage was complete, the disintegration of function was hasty.

The second time it failed, I discovered it was because during the first replacement, he suffered an additional bleed in his brain. The shunt grabbed some of that blood and since it's not a native internal object, the body didn't do the work of cleaning up the blood inside the shunt.

The really great thing about the 2nd replacement is that when my dude woke up, he really woke up! The doctor - who walked out of every surgery completely free of wrinkles (something that makes him just delicious in my mind) - decided to use a different pressure valve in this shunt. It was a higher pressure valve, so there would be marginally more pressure inside the kiddo's head so that the brain tissue wouldn't be impacted and the possibility of another bleed caused by the shunt would be reduced.


He tore the dressing off his head within 12 hours after surgery. He started sitting up. Scooting around on his butt. And within a year, he was walking! Granted, it was only when he was holding my hand, but the 2nd day he did the walking thing, we went to the mall, and he walked the WHOLE way around. He was ready to meet the world and the world needed to watch out! (check out that run on sentence...)

About the time he was upright and walking, he started going to school by way of the short bus. He was 3 little tiny years old and he started riding the bus the same day as Sweetie started Kindergarten.

We had IEP meetings and goals were set. He was suddenly so big and I learned things about him I hadn't known before. Things like he could put his shirt on all by himself. It's strange how when you have a special kid, other people can make them do more than they'll you'll let them do.

As a mommy of a special boy, I do everything I ever did for him. Once he went to school, there was an unknown about him there. The teacher and the assistants and the therapists didn't know that he couldn't do what I knew he couldn't do. So, they just expected that he could. And actually, they were right!

He has continued to blow my mind with his development. He can walk and talk and eat and grow and think and read and add and subtract. The reality hits me from time to time that when he was 4 months old, I was asked to sign a DNR.

I talked to his pediatrician, who left private practice to work exclusively with kids like mine, about 6 years later. He told me things I never knew. Those things have stayed with me in a special place that I go to when I need a little encouragement. At the times when I'm convinced I'll never be able to die because of my baby's need for me.

That doctor told me that when we were at his office nearly every day, he was as certain as the morning comes, that I would ask him to take my baby from me. He was certain that my baby wouldn't make it very long. He was certain that my baby would never really function.

His certainty was so significantly rocked as a result of my baby's life, that he had to re-write his conclusions about what could happen with babies like mine.

Now, my little baby is nearly 14 years old.

He loves NASCAR. He loves people. He loves music - singing and playing and listening. He adds 2 digit numbers and subtracts without borrowing. He reads at a high 1st grade level. He can't wait to cheer on anyone and everyone he can. He's competed in Special Olympics and taken the Gold!

He is an amazing creation. I can't take credit for his awesomeness anymore than I can for Sweetie's. God is so good and has blessed me through my kiddos.

1 comment:

  1. I have enjoyed reading about your "dude," especially since I've had the chance to know him a little bit when we were all in one place...He's a great kid - what a crack-up. I remember being at your place with M when he would come home from school, and how he would always play with that little ball and say silly stuff...