Damn Weigh-ins

We had off for President's Day, so obviously we made as many doctor appointments as possible. One was our monthly visit to "Eating School". This is where Adam sees a nutritionist, doctor, nurse practitioner, and behaviorist.

At February's visit he lost weight.

They said to change nothing yet, just keep the night feed the same. It doesn't mean anything. It is just one pound.

At March's visit (which was really April, because I can't take even one more day off of work and so the appointment was on Easter Monday) he did not gain any weight. He didn't lose, but he didn't gain.

That's no weight gain in 3 months.

We have to increase his night feed.

This depresses me for a few reasons.
1. It's not moving forward, it's not closer to removing that damn Mic-key button. I am so freaking sick of people asking me when it is coming out. stop asking me. I don't have a fucking clue. I am doing the best I can. Back the fuck off.
2. I know that the longer it's in, the more dependent he gets with it.

I am trying to stay positive, like self talking that we can bulk him up. He is having surgery this summer, so this way, we can pack on the pounds and all. He's still only four. Look how far he's come and all that smiles self-positive upbeat talk, but really?

really it is going back a step and that sucks.

Mic-key Button

Adam has a Mic-key button. It's how we feed him at night and it's basically what kept him alive for years while he had his trach. If you google images and Mic-key button, you can see pics and I'll try to take one of Adam tomorrow with his button. It's basically a little plastic piece like the part of a beach ball that you blow up and it has a deflated balloon. He has a hole in his stomach and you place this device inside the hole. Then, while keeping it in the hole, you stick a syringe (filled with water) into the side of this device, the water fills up the balloon and that water-filled balloon keeps the button in place. You know, otherwise the plastic piece would fall out of his stomach.

I'm not real sure if I'm explaining this properly, but it's a part of our life. Everything is relative. This button is amazing. When he first got the trach, he was like a little baby, the size of a 3 month old and at that time, he had a feeding tube that was inserted down his nose and we would feed him that way. He would constantly pull the tube out and cough it out and Phil and I would have to insert it back into him and use a stethoscope and air and syringes and check for placement, and confirm that we put it in right, before we would feed him. We worried that it wouldn't be placed right. Saying it was stressful is an understatement. You know how babies move while you are changing them, well, you can imagine putting a feeding tube in your baby's nose- it wasn't like he sat still and said, "Yay, please insert this tube down my nose into my belly".

 The surgery for the mic-key button was awesome and a huge improvement. It's amazing.

It's been there inside of Adam for 3 and a half years already. When he is sick, it is useful in preventing dehydration and giving him medicine. Last week he was sick with a fever and sore throat and we were thankful for it. Sometimes, I think all kids should come with one.

However, as he is getting older and better at eating, we are using it less and less. Adam has said to me, "Mommy, I am going to be sad if I don't have my button, " or he will say, "I love my button".

I suppose at some point whenever it is ready to be taken out, this will be a big deal.  It's a part of his body.

These get changed. If the balloon doesn't pop and it doesn't get stuck or fall out, it gets changed every 10-12 weeks or so.

Tonight was one of those times. It is harder and harder to do this. Before hand, we have to explain to Adam what we are going to do, that we are going to change it, just like he changes his socks or underwear, we need to take out the old one and put in the new one. We show it to him. He sees the supplies. He seems calm. He understands. He nods. We say it will feel cold. We confirm. We tell him it won't hurt. He is relaxed. He lies flat. He panics. He yells. He screams. He kicks. He punches. We have to hold him down. This fighting usually makes it harder to get the new one in place. Stomach fluid leaks out.  Tonight he was sobbing so much I thought he was going to throw up.

I'm exhausted.  My kids are badass.