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MACE/Mitrofanoff Day 9- Holding Pattern

Today was sporadically eventful.  The day started off with the permanent removal of TPN.  Hooray.  We also had our first clog in the suprapubic.  Boo.  As we have been warned, that was a painful experience.  We’ve been flushing it twice a day, but it just got backed up in a short period of time.  Contributing to this was the capping of the Mitrofanoff tube.  The Mitrofanoff had been draining a little if there was any overflow.  With it capped, the suprapubic had to do all the work of draining the bladder.  Brad was here during this episode, and he was the one to suggest flushing the tube.  He felt she didn’t have as much urine in her bag as she should.  He was right on target.  They sent 20 ml up the tube and then drew it back out.  After that, the pee just started flowing.

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Today we were supposed to do our first flush with the MACE.  Exciting.  However, we were in a holding pattern.  I’m not sure why, but it took a while to figure out the best way to acquire and use a potty chair.  Brad asked me to bring the potty ring from home.  I brought the potty ring that our toddlers use on the big toilet to potty train with- you know, the cushion-y kind.  The nurses thought I was bringing Anna’s toileting system.  I’m not sure they realized how big it was.  We have a Rifton that goes from toilet to shower, and has a back, as well as arms, a tray, and a foot rest.  It rolls over a normal sized toilet and straddles it.  I thought that surely they didn’t mean for me to bring that thing up to the hospital and wheel it down the halls.  I’m not even sure we would have been able to cram it into the bathroom.   Anyway.  The only equipment the hospital had was adult sized, and the nurse was afraid Anna would fall into the hole.  So, I suggested we get an adult sized toilet chair and put the potty ring in it to make the seat smaller.  Great idea.  Except for the fact that for the entire hospital (CMC main and Levine’s Children’s), there was only one person delivering equipment today.  As I write this at 8:30pm, the charge nurse is going down to the supply room herself and picking up our chair.  Oooh ooh!  It just came through the door!  Tomorrow I will let you know how it all goes.  Once we do the MACE and flush the suprapubic again, Anna will be ready for bed.

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In other news, Anna had a few visitors today.  Her friend Hayle came and they had a nice long visit together.  Anna is social, and has really cheered up during visits from her friends.  Emily (3) and Caleb (2) also got to come up and see their sister today.  We are all hoping tomorrow will be our homecoming.

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edit:

We put 100ml of water through the MACE (gradually).  Anna was wary of the whole thing and cried, but mostly because she was afraid, not because it hurt.  We made sure to put it in slowly and that the water was warm.  Right now she is sitting on the toilet chair watching Curious George and waiting for it to come out.  It’s all still in there right now, so I will bid you goodnight and report on the end result in the morning.

This is a fuzzy picture from my phone. I wanted to show you how we put the potty ring in the toilet chair to adapt an adult chair to a pediatric size.

2 Responses to “MACE/Mitrofanoff Day 9- Holding Pattern”

  1. sharon says:

    The Almighty certainly chose the perfect parents for Anna. Annie and Brad are both alert, informed and agressively loving when it comes to care of Anna.

  2. vonnie bishop says:

    Ditto the comment from sharon re: perfect parents for Anna!!

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