Made the call

I sent an email on Thursday to the feeding team at CHOC to schedule a follow up appointment for Maryam and to talk about taking Maryam's feeding tube out. I have such mixed emotions about taking it out that I've been an emotional wreck since I heard back that her appointment is September 20. That's the appointment to TALK ABOUT IT, not actually do it.

Maryam doesn't want her button taken out. This is the hardest part for me. As far as she can comprehend that button is a part of her body. Nothing else on her body just comes off, so why should her button be any different? We've talked about it with her, showed her how nobody else we know has one, and today I even showed her these pictures. These are pre surgical photos of her tummy. No fundoplication scar and no Mic-Key button.

After I showed her what she looked like before her surgery I showed her this picture. I wanted her to see what the button is really used for. We haven't used it in so long that she has forgotten what its even there for. I even asked her, "Hey Maryam, what's your button used for?" She said, "I don't know." I told her that we used to use it to help her eat when she was a baby and showed her more pictures like these so she could see what I meant. A few minutes later I asked her again, "Hey Maryam, what's your button used for?" She said, "To eat when I was a baby." I thought that was a great opportunity to explain that since now she eats with her mouth, she doesn't need her button anymore and she covered it with her hand and walked away.

So. How do I feel about Maryam's button coming out? I feel accomplished and proud that she has come so far that she doesn't need it anymore. I feel lucky that we were one family out of 8 or 9 families a year that had the PRIVILEGE to go through the inpatient feeding clinic at CHOC. I feel scared and nervous that maybe she'll get sick and fail and we'll need to put it back in again. And I feel sad for Maryam that she is losing, what she thinks is, a part of her body.

Link to the surgery information.

More tummy photos.