MACE/Mitrofanoff Day 4

Last night Brad was able to get Anna up and into a recliner.  He pushed her around the hall a little bit, but it was a brief trip.  This morning at 10:30 she was placed in one of those little red wagons that has a pole attached for hanging all your monitors and IV stuff.  We took a trip down the hall and read a book in the playroom.  After about 15 minutes, she was ready to go back.  Anna’s oxygen levels  started to stay in the upper 90s, so we took away the oxygen mask.  At around 12pm, she was complaining of pain “in her bottom”, which is different than the pain of her surgical site.  The nurse said it’s possible she had bladder spasms, and if it continued, we would get Dr. Perez to order something for that.  Dr. Perez came by around 7am, so I missed seeing him.  Brad said he took the dressings off and looked at the stomas.  They must have looked fine because I didn’t hear a report otherwise.  Anna had some greenish drainage coming from her bottom.  We assumed it was rectal, and planed to talk to Dr. Perez about that when we get a chance.  It may be a good sign that things are moving down there.


Anna’s little trip this morning seemed to wear her out.  Dr. Frick came by and changed the dressings on her legs, but other than that, Anna spent most of the day dozing and watching TV.  I got her to blow bubbles a few times to exercise her lungs.  Around 6:00pm we got her back out of bed for another trip in the wagon.  This time we were out for an entire hour!  There were a lot of trips up and down the hall, but we spent a good amount of time in the playroom.  We played Go Fish, Connect Four, and Wii Bowling.  Ok, so I did most of the “playing”, but Anna partially participated.  The only bad thing to come of this was that our IV kept getting occluded.  They play room volunteer called for someone to come fix it, but no one ever came.  We were busy entertaining ourselves, so by the time we left at 7:00 (when the room closed down) and finally located a nurse, blood had backed up in the line and clotted.  Because of the clotting, it was not able to be flushed.  Fortunately, the central line has three little lines coming out of it.  One for the IV, one for the TPN, and one extra.  The nurse just detached the IV line and used the spare.  Now we need to make sure it doesn’t happen again because we have no more extra.  At some point tonight Anna will have a flu test done because Caleb was diagnosed with the flu at the pediatrician today.  Until the results come back tomorrow morning, she is confined to her room, but that shouldn’t be too much of a hardship.  We’re still just waiting for the day that the ng tube comes out.

Anna rode in the wagon today. She was supposed to get up at least 2 times.

4 Responses to “MACE/Mitrofanoff Day 4”

  1. donna carley says:

    when i had this surgery done (i had everything same as your little girl) my colon and bowels acted much different.. its like “boom” it was awake.!! i had to take laxatives at high doses to go to the bathroom at all, but when my augmentation was done and my MACE things “woke up”… and moved more quickly through my system… this could be the greenish drainage going on… bowels are waking up possibly?? anna is still in my prayers.. hope she continues to do well. glad she is up and moving.. !!! great sign! Praise God!

  2. Allie says:

    Thinking of you all…hoping for quick recovery for Anna and good results to come.

  3. dianne helander says:

    I am reading your posts each day and anticiapting the next. My daughter with SB is scheduled to have this surgery in March. She is also scheduled to have an MRI soon and is very nervous about it so I had her watch Anna’s video. It helped a lot so thank Anna for being so brave. After the video Naomi asked if she could meet Anna. Too cute. Naomi is seven.

  4. Leon & Debbie says:


    You are the coolest girl I know!! Second place is not even close. Mrs. Debbie and I can’t wait to see you.
    Huggs and Kisses

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