Wednesday, October 27, 2010

A little swticheroo

We spent two hours at the GI doctor this morning. Maggie screamed the whole time. Now, usually this would really stink. But I was actually glad the doctor could see her misery in action. I told him that she cries constantly. And it all started after we got the g-button two months ago. I told him that (thankfully!) the vomiting has stopped since we put her on a new formula at a 24 continuous feed. And he told me that her barium fluoroscopy test from yesterday came back normal.

So we brainstormed for a while as to why she could be in pain. My instinct is to think her esophagus must be horribly burned after such terrible reflux, but he thinks the Prevacid she's on should prevent that. He suggested that he could do an endoscopy under anesthesia so he could look down her throat and see if he sees any problem issues or an ulcer. But as we were talking, I told him that every time I touch her button, she winces and cries. And she refuses to do "tummy time," I assume because it hurts her. He told me that a button should not hurt and, after inspecting it, suggested we try a different sized button.

So you would think after all I have seen and experienced over the past year I could handle him casually popping out her current button and putting in a new one. But I have to say, I really thought I was going to hit the floor when I saw through the corner of my eye what it looked like. I know it doesn't bother some moms, but it just makes me so weak to see a perfectly round hole in my daughter's stomach. It sounds strange and awful but it looks exactly like a little bullet hole that's not bleeding. And, is it just me, or is it really strange that they can just pop those things in and out like so routinely like that? Seems like they would at least need a nurse in there to assist (especially in the case of a fainting mother!).

So the plan is to keep feeding her continuously and hope that the button replacement helps her pain. If not, we will do the endoscopy. He agreed that with all of her medical issues we cannot assume that she is just going through a fussy phase. Thank God for good doctors who promise to keep trying to help your children until they get it right. It means so much to me. And they are going to order a portable feeding-pump-in-a-backpack (lovely!) so I don't have to lug around that tripod thing.

I just hope that I can have my happy baby back soon. Although I did tell him as we left that I can deal with anything - even constant screaming - if my struggling child would just start gaining weight...


  1. I almost fainted when I saw the hole from my mom's G-tube. Totally agree with you, it is a strange sight seeing that hole. Thankfully she has only a minimal scar from it, so one day soon it will be only a slight reminder to Maggie of how her mom and dad fought so hard to keep her healthy and help her grow. Praying this new button will be the end to Maggie's pain!

  2. You will LOVE the backpack. It makes life so much easier. Even around the house the backpack is less cumbersome. You just have to get used to it - like all medical things.

    And the g-tube hole - well, wait until she pulls it out on her own at home. Or worse yet, you pull it out on accident. It's happened in our house a few times. I am quite proficient in getting it back in by myself. (Rick almost faints.)

    I will call you this week. My craziness is crazy, but your craziness wins! Keep your chin up - you can do it!