MACE/Mitrofanoff Day 3- TPN

The day after surgery has been mostly characterized by sleeping with periodic wakefulness.  Anna slept/rested until her morphine wore off.  Then she was wakeful until the next time she was able to receive the morphine again.  Generally, by the time the two hours were up, she was requesting more pain meds because she had been coughing, which made her tummy sore.  The ng tube continued to suck out bloody goop- but not a frightening amount.  By the end of the day, we hadn’t quite reached 200cc, which is ok, from what I understand.  There was a lot of video watching (or rather video listening, since she often had her eyes closed).  Cinderella played so many times that Brad accidentally referred to the anesthesia as Anastasia.


Dr. Perez came to visit in the early afternoon.  He expressed the hope that Anna would sit up a little more, and perhaps try to move around some.  Anna expressed the hope to not do those things.  We had a couple periods where her oxygen would drop.  Since it looked like she would have to continue to prop the oxygen mask near her face, the nurse added the humidifier to avoid drying out her nose, mouth, and throat.  Anna was not allowed to drink anything, but she was allowed to have ice chips.  They also provided little sponges on a stick that you could wet and use to dampen your tongue and mouth.  They were faintly mint flavored.  Anna did not prefer to use them.  She swatted us away, so we didn’t press the issue.


At 6:00pm, we started TPN.  TPN stands for total parenteral nutrition.  Sometimes it is referred to as hyperalimentation.  Basically, it’s pre-digested food that goes in through your central line.  Actually, I don’t think it’s really food, exactly, but it is the nutrients that make up your food- sugars, proteins, vitamins, etc.  The bag was hooked up to the IV, and should be running in gradually over a 24hr time period.  After that, our next goal is just to get her sitting up.  When I left this evening, the nurse was giving her more morphine in hopes that it would make her comfortable enough to sit up in bed, at minimum, but preferably transfer to a recliner.  We waited until Daddy got to the hospital for the night because I knew he would be able to help lift her.

These vitals are ok, but not excellent. Oxygen often dipped to 85 and heart rate jumped into the 180's, which is not preferable.

The oxygen (green) now has water attached to act as a humidifier. The Medi-Vac canister is where the goop is going after being sucked through the ng tube.

The TPN bag contains a white, milky looking fluid. It was covered by a special bag that protects the food from light (like those yellow milk jugs).

5 Responses to “MACE/Mitrofanoff Day 3- TPN”

  1. Kristen Love says:

    Bless her heart, that is a lot for a 5 year old to go through, but boy she sounds like a trooper! We are praying for you all!

  2. Beth Cain says:

    Oh it sounds awful. I cannot remember how old Anna is now. I’m wondering how you come to the decision to do the ACE/mace procedure. Anna is in my prayers for healing. Holding you and your family up with prayers, it must be stressful.

  3. Ginger Wyrick says:

    Thanks for these updates. Richard and I continue to pray Anna (and you all) through each step of this process.

  4. Wendy Williams says:

    We are praying for you all, especially little Anna!

  5. Jennifer says:

    Bless her! WE went thru this with James last summer, rough days but now so worth it, he was also 5 at the time.
    Best of luck for speedy recovery!!

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