MACE/Mitrofanoff Day 2- Surgery

Anna slept well last night.  The team came in around 6:30 to get her ready to go down to pre-op.  Anna was ready to do the surgery, but naturally wanted us to stay with her until the very last moment.  I was able to lay on the bed with her as she was wheeled down the hall.  Since it’s New Year’s Day, staffing is a little low, so we were taken back further into pre-op than usual.  Most of the time they have staff taking care of you in little rooms before you are taken back to surgery.  This time we were hanging out right outside where the OR is.  Anna was given Versed to calm her down and help her separate from us.  She had become a little concerned because she heard they might put a line in her neck for the administration of antibiotics.  She was also upset because we didn’t have a definite time that the surgery would be over.  Four to eight hours is a pretty vague time frame for a 5 year old.


Surgery started at 7:30.  The OR called our room every hour to let us know she was doing fine.  Since we were admitted the day before, we avoided having to hang out in the surgical waiting room.  At 12:30 the nurse informed us that she was still doing well, but that it was necessary to do a bladder augmentation, adding more time to the surgery.  At 2:45 Dr. Perez (the urologist) came in to discuss the surgery with us.  At that point Dr. Frick (the ortho) was taking the plates out of her legs.  All the “pee and poop” stuff had been done.  Anna did well, and this type of surgery causes little blood loss.  Perez had to place three tubes because of the augmentation.  The third tube will drain the bladder until it heals enough for it to safely expand and resume cathing.  He said that when we are finished with that “hole” we just pull the tubing out and it heals up on its own.  Anna probably won’t eat for another couple of days, so the ng tube will stay in and she will also receive IV nutrition before putting anything in her stomach.  We were told we wouldn’t be trying to flush the colon until she was taking foods by mouth and moving around.  It took us until 5:30pm to finally make it from the recovery room back to our floor.  Anna had a central line put in her neck to allow both IVs and blood draws to be done without having to stick her multiple times.  Before anything could be hooked up to it, we had to have an x-ray to make sure it was in place.  X-ray took a while getting to us (again), but once the films were read we were out of there.  The nurse read off her list of medications once we were settled in the room.  I heard “Tylenol”, along with several antibiotics.  I inquired what other pain medication she would be getting, and the nurse realized they had forgotten to order anything.  It was a good call on my part to ask, because the morphine from the recovery room only lasts about an hour or so, and they wouldn’t have been able to give her anything else for pain until the doctor was contacted and it was ordered.  That wouldn’t have been something we wanted to find out after Anna had already started to wake up and feel bad.  Dr. Perez was consulted and quickly added pain management to her chart.  Toradol every 6 hours on schedule for the next 48hrs.  Morphine as needed every 2 hours.  Tylenol with codeine allowed.  Anna had to continue to have oxygen blowing- which is typical for her.  Her saturation level has a tendency to drop after surgery.


What does the surgery site look like?  I’ll try to post pictures.  We have three drainage tubes to keep track of.  One for the MACE, one for the Mitrofanoff, and one extra one that is draining the bladder (because of the augmentation).  Two tubes are about an 8fr size and one is probably about an 18fr.  The ng tube looks a little yucky because it’s in suction mode right now.  It’s taking stuff out of her stomach so she won’t throw up or feel sick.  Anna also has both legs wrapped in some kind of stockinette-looking bandage from where Dr. Frick took out the plates.  He wants her to put her AFOs back on as soon as possible, and to keep the dressing dry for the next week.  After that, the site can get wet, and she will start standing as tolerated.

This is the MACE and suprapubic catheter line. The MACE is plugged. You can't see anything for the bandages.

This drained the bladder because of the augmentation. Blood is normal after augmentation surgery.

The line in the neck allows both IVs and blood draws to be done without extra sticks. Nutrition can also be given this way.

The mitrofanoff bag stayed pretty empty.

Stomach goop being sucked out through the ng tube.

12 Responses to “MACE/Mitrofanoff Day 2- Surgery”

  1. Kim Casteel says:

    Hi, My Daughter had the same exact procedure done 2 years ago. I Hope ur child has a speedy recovery. my daughter was in hospital for 30 days its a very traumatic surgery. I will keep u guys in my prayers

  2. Annie Beth says:

    Thank you, Kim. We appreciate the prayers. Thirty days is a long time to be in the hospital. I hope everything goes smoothly without complications or infection.

  3. donna carley says:

    i have the very same procedure identical to everything anna has… i was 43 when i had mine done… i had the NG tube, the central line in my neck, the suprapubic catheter, the mitrofanoff catheter, and the MACE catheter as well. i also had the augmentation done… God bless this little girl.. she is lucky to have it done young and by competent surgeons…it will enhance her life dramatically. she will be very sick for a while, but my prayers are with you and your family.

  4. Becky Granger says:

    Glad to hear things have went good so far. Will keep all of u in our prayers. We have tossed around the idea of the MACE for Mackenzie, but are having a tough time with that decision. I am very interested in what u think once things are pretty much back to normal at home. Thinking about switching urologist as well to Perez. God bless

  5. Tracy Jensen says:

    Hi Annie,

    Keeping you all in our prayers that she does well….has no infection….we only had the MACE so the rest is unfamiliar to us….but I think you are amazing for doing this website. :)

  6. Nancy Tuttle says:

    Kristin had these done as well. I know it’s a hard road to travel but you’re not alone.

  7. Kara says:

    My daughter is having these procedures on March 9th. I’ll keep anna in my prayers!

  8. Jennifer Dann says:

    Hey Annie Beth,
    God Bless you and your little daughter and the rest of your family. Your faith is incredible and inspiring. I volunteer at Levine’s and wanted to know if I could come visit you and your daughter there. Let me know what you think. My thoughts and prayers will be with you……take care……

    Jennifer Dann
    Sisters bible study group /PPC

  9. Rose Mary says:

    Bless you for taking the time to educate us about this. I know one day my son with Spina Bifida will probably have this done. I pray all goes smoothly for your family.

  10. Denise Whillans says:

    Wow!! Thank you so much for the info and pictures-my son is having the mitrofanoff done next week and I was paranoid about what he would look like post op.
    Blessings to you and your family as she will continue to get better and I’m sure a better quality of life!!

  11. Annie Beth says:

    I wish I had a less fuzzy picture of the surgical site. The Dr. comes in around 6 or 7 am, making for really bad lighting. Otherwise it has dressings over it. The first time I get a chance to take a better picture, I will. That was a big thing for me, as well. I couldn’t find a satisfactory picture on the internet.

  12. Betsy Caswell says:

    Hi. I hope that you are still checking in. My 7year old daughter has Spina Bifida and is scheduled to have the same procedures done this August. I am really quite scared and would love to hear how you are doing and if you would advise for or against the surgery now that you are through the other end. Thanks, in my prayers, Betsy

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