The Button

Cole got an AMT Mini button today. Right now it looks pretty gross, being held in by two stitches and has dried blood around it. Doesn't quite look like the beach ball plug I've described before, yet. I'll spare the close up shot tonight.

There are a lot of reasons that we did this. We (Cole included) are tired of the daily fight with medication. It is a wrestling match each time and rarely do I get it all in. Something usually ends up coming out on me, the furniture, clothes, etc. I don't know how many shirts I have had to throw away that have been a casualty of fish oil. Man, that stuff stinks! Even if you pre-treat and wash in hot water immediately. I can still smell it after three or four washes and the oil just seeps in and stains. Both of us being naked for meds in an effort to save clothes, really doesn't work ;) We know that Cole is going to have to take medication for the rest of his life. Now, thanks to this nifty tube, I won't have to sacrifice cute clothes, or do a headlock for regular meds ever again! (fingers crossed) I think Versed will still cause me to have to pull out the wrestling skills.

Cole has been gaining too much weight. "What? I thought kids who are losing weight get tubes?" If that is what you are thinking, you're right...unless the kid is on the ketogenic diet. Cole is not eating enough of his meals, to properly use the diet for it's full effect. Instead of all of that fat bonding to the carb+protein and then burning the fat to produce ketosis, his body is storing the fat. Pants that I had completely tightened the waist on two months ago, don't fit right now. So, Mr. Chunky will finally start to lose a little and hopefully take full advantage of high ketones. Hey, McDonalds three times a day everyday will make anyone get a muffin top! (Except maybe Brian) Cole has never been really interested in eating. So, now he can eat the good stuff and the yucky stuff can go in the tube. Next time he brings on one of his famous hunger strikes, we can just mix up KetoCal formula and push it straight through. It will be great for traveling and also to make sure he gets enough fluids. He forgets to do things, like drink, when he is distracted. Hopefully with better diet control, it will equal better seizure control. We don't want him to end up like a few other kids on this diet and turn completely anorexic. He needs to enjoy food. Right now it's just traumatic. The diet is important enough for controlling the drop seizures alone that we need to stay on it.

His nutrition will drastically improve. Right now, with the med fight, he is only taking 2 of 9 meds on a regular basis. There are not a lot of vitamins and minerals in heavy cream and he is not being supplemented with other foods. Watermelon isn't really known for it's nutritional value. If Cole gets bruised, which he has been a lot lately, it stays for 2 1/2 weeks. One of his IV sites from his previous eye examination, did not heal for well over a month. There just isn't enough good stuff in his system to promote healing. We are hoping to get him back on track soon so that he doesn't end up with a cold that turns into pneumonia, or something worse.

These are just a couple of the reasons that he had this surgery today. It's something that took a lot of hard thought, but I am loving it already! When we just slipped that Keppra in right after the O2 crisis, it was like a small piece of burden was being lifted from my shoulders. I really think that it will help our relationship too. I don't think that I am getting out of the "mean mommy" role in his eyes anytime soon. Yet, if he gets to the point where I really need to give him something; I won't have to blow in his face, plug his nose, try to measure what went in and what went out by a small puddle on the floor, coerce him to swallow, or a myriad of other things I have tried. I have a friend who wishes that all kids were born with g-tubes ;)

I'll post more of an update on our social butterfly tomorrow. What? You didn't think that he would refrain from flirting with the nurses, hitting the halls after surgery and being in pain, did you? This is Cole we're talking about here! Mini Hulk has super strength and super lady killer skills.