Thursday, January 20, 2011

There's that word again, "Sometimes" Part 2

Thursday after ballet class we went out to dinner. Brett and I were sitting across the booth from Maryam and Yaya and Jax was at the end of the table in a high chair. Maryam stood up on her knees to reach something and that's when I saw it. Maryam's stoma is leaking. I remember gasping and pointing. I remember Brett asking, what? I remember pointing and saying, Oh my God. She's leaking. That's when the panic set in. I took her into the bathroom to see if she really is leaking, or if she spilled something. I was right, she was leaking.
I emailed her GI team at CHOC. I put a bandage over her hole to see if anymore leaked out during the night. I asked her a ton of questions like, does it hurt? Does it itch? Have you noticed it being wet? I checked it for infection. It wasn't hot, red, no puss and no smell. It was just leaking!
Brett called Dr. Matt at Maryam's old NICU just to get some sort of assurance before going to bed. I called my friend Jen, one of Maryam's NICU nurses and now GREAT friend. Both agreed that it wasn't infected and that it wasn't an emergency but that she should be evaluated.
The next morning after little sleep I got an email from Maryam's GI team at CHOC. Robyn said that it sounds like Maryam's stoma had reopened or hadn't fully healed and was leaking stomach content. She said it will need to be surgically closed. Then she said something like, "It happens sometimes." I asked her to call me so we can talk in detail about what's going to happen and when.
The surgery is only a couple hours long. Its an outpatient deal. Maryam will most likely be intubated because she will be under general anesthesia. The surgeon will go in, take out the tunnel, sew up her stomach and then sew up the outside of her stomach. Instead of Maryam's stoma looking like a second belly button, its going to look like a straight line. And, it will NEVER leak again!
We're going to see if we can get on the surgery calendar for March. We'd rather her not be in the hospital during the winter months. She's very susceptible to infection and illness so we're going to wait until after the flu season is over.
That's our latest! Wish us luck. I'm still trying to figure out how I'm going to tell her she has to have surgery. She already hates doctors, lab coats, hospitals, doctor offices and anything else medically related. I think physically she's going to bounce back quite quickly, its the psychological trauma that is scaring me. My poor baby is going to be so sad.

If you want to read my first post about the "sometimes baby" you can read it here.

1 comment:

  1. poor poor girl! I dont envy her finding out she has to go back. Im so glad to know it can reopen, I will expect that to happen when Evan's finally gets to come out- probably not until he is a teen. He is a sometimes baby too. Maybe our children should play the lottery :)