Thursday, January 19, 2012

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.

Sunday, January 1, 2012

Happy New Year. For real.

So last night, before Phil and I went to sleep, we were talking about some of our past New Year's. Namely the one that stood out was the one 4 years ago or so.

Adam was in Children's Specialized and he had been given his tracheotomy Thanksgiving weekend and it was now New Year's Eve. He was still in the hospital. We were still in the hospital. We had been taking turns since Thanksgiving, never leaving him alone. We were exhausted and overwhelmed. Phil left the hospital when I came at dinner time and he went home to sleep. I made my "bed" (the bench) in Adam's hospital room. I was turned it for the night and trying to get a bit of rest, with the beeps and the oxygen and the suctioning and my little 7 month old baby with a hole in his neck sleeping an arms length away. When what to my wondering eyes should appear but Philip. He had driven back to the hospital and came into the room to kiss me at midnight happy new year's style. It was lovely. We were so tired and cuddled on that little teeny bench making prayers and promises and pacts to do our best. I made lots of deals with myself that year, lots of please if we can get through this, than I'll.... whatever, fill in the blank with a million different things.

Anyway, point is we made it through that New Years and it was one of the best New Year's Eves I ever had. 
Today is the first day of 2012.  If I look back on Reflection on last January (see post)  January 2011 post Adam was doing great.

So, have we made progress in a year?

 YES!  Now, January 2012. He eats lots more than last year. We can add to the list: carrots, tomatoes, cream of wheat cereal, meatloaf,  ham, pizza, peanut butter and jelly sandwiches and m and m's.  He drinks 8 ounces of Carnation instant breakfast with whole milk 3 times a day and will ask for water during the day. The meals are less structured. We have cut his night time feeds in half since last year.  We go to therapy every month and will continue to make progress. 

On a personal note. This year, I did my first triathlon and my first half marathon. It was one of those... I promise I will exercise and be healthy I promise I will find time to do whatever I can to avoid being in hospitals again promise that started with a 5k.

Boasting alert: We also managed to do all this, while my main man took grad classes, coached high school football and worked full time (I also work full time). 2011 marked my older son's entry into middle school and I couldn't be prouder of him. of my little guy. and of us. 

Happy New Year!