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MACE/Mitrofanoff Day 1- Cleanout

For me, personally, this was a bad day.  I’m sure Anna would say the same.

Admission to the hospital was at 9am.  After an hour of fiddling around with paperwork, IVs, etc., Anna was settled into a room around 10.  At 12:30 the Golytely was ordered, but Anna didn’t like the original flavor packet, so it was more like 1:00 when she started drinking.  The taste is tolerable (with the Crystal Light flavor packet of your choice), but not good.  Despite a sticker chart and prize incentives from Child Life, at 3:15 we were only 3 cups into the 8 cups (2 litres) Anna needed to finish.  At that point we had to talk ng tube.  There was a little back and forth about that (Anna claimed she could finish the liquid in time), but we had to over rule and go with the tube, otherwise we were risking being ready in time for surgery tomorrow morning.  While the experience had been unpleasant up to this point, this is where it went sharply downhill for a few minutes.

***

The nurse had Anna lay back to place the ng tube.  I assume this is because most children fight, and it’s easier to hold them still if they are laying against the bed as opposed to sitting upright.  Unfortunately, it wasn’t the best position for us, and instead of going into her stomach, the tube coiled in her throat.  This caused her to throw up.  Anna has a strong gag reflex, so it took a couple minutes to figure out something wasn’t right.  The nurse expected her to gag a few times and then settle down once she relaxed.  Instead, she kept crying and throwing up, crying and throwing up.  I’m sure it was only for a few minutes, but it felt way too long to me.  I was asking about sedatives- anything to get her to “relax” so the tube wouldn’t bother her.  For the record, they can’t give anything like that.  Finally, the nurse that placed the tube figured out that it hadn’t gone into her stomach.  They removed it and placed it again- this time with much less trauma.  Anna aided the process by swallowing to keep the tube moving down.  The tube was still causing nausea, but it was much less.  Zofran was given through the IV for further relief.

***

Before giving the Golytely through the tube, an x-ray had to be taken to make certain the tube was in her stomach and not sitting right above it.   We had to wait on a rolling x-ray machine that made a stop at the NICU and PICU before coming to our floor.  It was 5:15 before the x-ray was taken. 6:15 before we finally got the x-ray read and the feeding tube started.  They start out slow and then gradually increase the volume as you tolerate it, so we started at 8oz every hour- not a terrible amount.  Anna had already started softening things up at home, so the Golytely was working very well.  I had to leave at 7, to go take care of our other children.  Brad stayed at the hospital.  When I left,  Anna seemed more comfortable and was starting to doze off while watching a movie.  Surgery’s at 7am, so I need to get home, eat, and do housework before getting to bed at a decent hour.  5am will be coming too soon.

Hanging the bag for the ng tube.

This helped some, but it took more than a "spoonful of sugar" to make the medicine go down.

She needed to drink 2 litres of this stuff. Gross.

The prize for completing the clean out. Thank you, Child Life Services.

5 Responses to “MACE/Mitrofanoff Day 1- Cleanout”

  1. Caroline says:

    I am sure you recording this here is going to be a blessing to others, but I sure am sad Anna has to go through it (and you guys with her.) I hope things go okay in surgery!

  2. Carol Hartman says:

    I can only hope that this will be the worst part of the ordeal for her, but I know she has a few rough days ahead. We will pray for her “unceasingly!”

  3. Cheryl says:

    So Sorry to hear about your day. Praying that surgery will be successful. Hugs for Anna (and mom, too)

  4. donna carley says:

    i drank this stuff too… and the x-ray tech gave me the wrong stuff at first, constrast instead of the other ( a mistake on their part-imagine that) so i had to drink golytely on top of the other.!!!!i was in the bathroom for hours… be careful and watch everything they do for your kid… believe me they make mistakes ALL the time.

  5. margie atcher says:

    My grandson will be having this surgey soon, I would like to know how things are going for Anna now. Is there a way my daughter could contact you personally. My daughter is very concerned about the surgery ,as you already know this concern. Thank you very much

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