Mic-Key Has Landed.

Sing along with me everybody!

M – I – C – K – E – Y M – O – U – S – E

Er, I mean…B– U – T – T – O – N !!!

Christian is FINALLY the proud owner of a Mic-Key button!

I’m so glad this is finally done. And this is what we decided and how we came to our decision on the whole fiasco.

We had decided to request that the doctor pull the tube out with Christian conscious but in the operation room so that if there were any complications, as suggested, he could be given emergency surgery right then and there. The way things were explained to us is that the tube he has is the original tube and has a flat disk on the inside of the stomach to keep it from falling out. Because of the flat disk, the doctor has to pull extra hard so the disk will collapse and come out of the small stoma (hole). There have been a few instances with babies like Christian that if they tighten while in pain, the stomach will rip away from the wall of the abdomen. This causes an emergency situation and possibly a scar if it has to be repaired.


But…this all revolves around “the possibility” of something going wrong. That’s what brought us to the decision to ask if she would attempt the routine procedure of pulling out the tube with him conscious (which happens everywhere, every day).

So because one of the issues was that Christian was likely to be tight when uncomfortable, we decided to have him attend his OT therapy so he could get all stretched out and relaxed before the procedure/surgery was scheduled. When we arrived at the appointment, I suddenly had a change of heart. I felt like I was intentionally putting my child through pain to avoid anesthesia and I didn’t know which was worse. I read the risks of anesthesia – respiratory distress, brain damage…death. How as a mother do you decide what’s best? Was I just trying to be disagreeable because of what happened with the trach? Probably, a little. I just don’t ever want to be bullied into having another procedure done or giving another unnecessary medication to my son again.

My husband did reveal that he was more comfortable with Christian going under general anesthesia for the procedure so he wouldn’t feel any pain. I then remembered that Christian has already been under anesthesia. It was when he got the g-tube and trach and he did fine with it. Of course now he’s a lot more reactive and expressive with pain or if something is bothering him.

In the end we had all of our questions and concerns addressed by the anesthesiologist, the doctor, and the nurse and we decided to give him the general anesthesia gas through his trach with no IV’s unless necessary. As we were talking Christian started to drift off into his morning nap. He had been so aware and paying so much attention this morning. He was looking to the left and turning his head to follow his gaze. I didn’t want to lose any of that when he woke up from surgery. I told my husband, “Why can’t they just pull it out now really fast while he’s asleep?” Only half joking.


We sat down in the waiting room and I was hungry (big surprise) so my husband went to get me something to eat in the cafeteria. We hadn’t been sitting for longer than five minutes before the doctor came out and told us everything went well and Christian was already in recovery. It was that fast. Half hour later we were told he was awake and we could go get him. I was so afraid he’d be groggy and wouldn’t be that alert little boy I left on the hospital bed. But his eyes were huge! He was a little off focus but he looked like he was ready to go! We dressed him and took him home with his button intact. He’s been fine since then with the exception of a little irritability. I’m just happy it’s finally done.

And on a side note, none of the doctors or nurses there were familiar with hyperbarics! It just surprised the hell out of me. I know it’s new and this is part of our lives now so we know the ins, outs, ups, and downs, of it. And I don’t expect the general population to know about it at all. In fact, I’m happy to talk about it all day long. But I was just floored that not one medical professional in that room knew ANYTHING about it. I had put down on his medication received list that he was receiving oxygen therapy.


The actual surgeon said, “So tell me about this oxygen therapy.”

I said, “Hyperbarics.” Thinking she’d surely know what I was talking about.


She looked puzzled and said, “And what does it do?”

Wow. She should read my blog.