MACE/Mitrofanoff Day 6- NG Tube Removal

Anna had a bad night last night.  She had lots of gas pains and finally started pooping.  The poop looked like the goo that was coming out of her stomach- which makes sense given the fact she hasn’t eaten anything and was cleaned out for surgery.  However, the poop and gas are a good thing in the long run.  Because her bowels are working, we were able to remove the ng tube this morning around 8:30.  Hooray!  But before you start celebrating too hard, she is still on clears, which means we’re keeping the IV nutrition.  Anna’s stuck with jello and Popsicles for a while.  Of course, jello is much better than no jello and a tube in your nose, so…


Today, the nurse demonstrated to us how to flush the suprapubic and Mitrofanoff.  Everything has been flowing great so far, but we’re supposed to do it every 8 hours for now, to prevent mucus build up and to make sure the catheters don’t get blocked.   We’ll have to do the flushing on our own once we get home.  Anna is now wearing her AFOs in the bed.  When Dr. Frick removed the plates he said the only way he could get away with not casting her was if we promised to make her wear her AFOs.  We didn’t want to have casts on top of this surgery, so we promised to be good.  Originally, her legs were bandaged so thick that they didn’t fit into the orthotics.  Now they only have gauze and tape, so we had to put the AFOs back on.


At 6:00pm Child Life had a craft event on the 8th floor.  Anna never wants to get in the wagon, but she has to, so I decided this would be a good excuse to go for a ride.  While the overall experience was positive- she made two crafts and I read her a couple of books- we had an unfortunate event while getting into the wagon.  Lifting from the bed involves 2 or 3 people because of catheters, possible poop, IV, TPN, etc. etc. etc.  This time around, Anna’s TPN line got hung on something and pulled on her central line.  It wasn’t a violent tug, but it was enough to pull it away from her neck some, causing pain.  We had to add tape to it to keep it from pulling more, and Anna was pretty miffed with us during the whole ordeal.  When we put her back in bed after the excursion, we made sure it was a 3 person job instead of just two.  One person to lift, one person in charge of the suprapubic and mitrofanoff bags, and one person in charge of the IV lines.  Once she starts eating, the IV can go away because it is there mostly for nutrition.  We hope that tomorrow she will be able to start eating solid foods.  She said the jello “didn’t taste good” today- probably just the effects of meds and having your mouth dry and empty for so many days.  We’ve been encouraging her to drink water today to prove that her stomach is handling it.  Water is always better in an exciting cup.

This is Anna's Contigo water bottle she got for Christmas. She is more willing to drink from this water bottle than from the hospital cups or even the apple juice containers.

9 Responses to “MACE/Mitrofanoff Day 6- NG Tube Removal”

  1. dianne helander says:

    Sounds like things are still a bit stressfull. Thanks for sharing. Hang in there you’ll be home soon.

  2. dianne helander says:

    Sounds like things are a bit stressfull still. Hang in there you’ll be home soon. Does the suprapubic catheter come out before you go home?

  3. sharon says:

    I’ve been somewhat computer-less since the week prior to Christmas. Now I’m finding all these things little Anna is going through. You know I want to help in any way Annie, and you must tell me what/where. I’m praying for you all.

  4. donna carley says:

    i had so many tubes the nurses labeled em to know what was what.. i am going to write a book ” i survived a mitrofanoff at uams in little rock, ar.” it was a nerve wracking experience..

  5. Annie Beth says:

    No, it will stay in for a while. We have to wean off gradually by clamping if off for such and such amount of time before letting it drain, then gradually lengthening the time until she doesn’t need it and can just cath through the Mitrofanoff stoma. We’ll still be messing with it at home. However, once it comes out, Dr. Perez will literally just pull it out and that will be that. It will heal up.

  6. Ginger Wyrick says:

    Thank you for the daily updates! We are praying for a speedy recovery for Anna and endurance for you!

  7. Kelly Frost says:

    Thank you so much for sharing your experiences. We will be facing this in the not to distant future, and it helps to know what to expect. Best wishes for a speedy recovery Anna! You have many people sending out their good thoughts for you and your family.

  8. Cassandra says:

    omg i am so glad shes doing better :)

  9. Cassandra says:

    i <3 that hospital.. hang in there! u guys will be on ur way home soon. we love you guys!

Leave a Reply