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MACE/Mitrofanoff Day 10- Home

Last night, all went well with the flushing of the MACE.  It was rather comical, actually.  Dr. Perez said to start with 20ml and continue up to 100ml as long as she tolerated it.  We were using warm tap water and a large syringe.  Anna was very afraid of the “what ifs” of the situation, but she had much less discomfort than she anticipated- if any at all.  After putting the water in, we set Anna up to prop her legs up on the bed (because of her orthopedic surgery) and watch Curious George.  We expected a 20 to 30 minute process max.  An hour later….  I asked Anna if she had pooped yet.  I was relying on her to tell me if she felt anything come out, because unlike on our toilet at home, there was no gap to see through between the seat and the bowl of the commode.  The toilet chair was one solid piece.  Anna said that no, she had not yet pooped.  I was soooo tired at this point.  I just wanted to go to bed.  In desperation, I went over to the chair and tried to peer into the container without shifting her around too much.  Lo and behold- there was all the water and poop, sitting in the bottom of the toilet.  Anna was just as surprised as I was.  I think she expected it to hurt or be uncomfortable or crampy.  It probably all came out within the first few minutes of sitting on the potty, and we could have flushed her suprapubic and gone to bed an hour ago.  But, oh well.  At least the result was better than expected.

***

I spent the night last night.  I usually dislike spending the night in the hospital because I wake very easily.  On the suggestion of another mom, I took some Motrin PM to help me sleep.  This was a great idea because it also helped with the aches and pains I get from sleeping on firm surfaces.  I had borrowed from my mother-in-law a sleeping bag and the pad that goes underneath.  This gave me a little more cushion and was quite cozy.  I laid it on the bench/couch in the room, tucked the edge of the sleeping bag in between the seat cushion and the back cushion, borrowed a hospital pillow, and I was  set.  During the night, Anna had to have her suprapubic irrigated 3 times.  In the morning, the nurse and I discussed the fact that Anna didn’t drink enough water the day before, making the urine more concentrated.  She suggested that drinking more urine would keep the urine dilute and help us avoid clogs.

***

Dr. Perez came to visit at lunch time, bearing gifts.  He had an arm full of extra syringes (of varying sizes), prescriptions for saline, Septra, Ditropan, and Tylenol with codeine, extra catheters, tube plugs, dressing supplies, two sets of scissors and tweezers, sterile cups, gloves, and an extra urine bag.  He announced that we could leave any time we wanted, and proceeded to inundate us with information regarding irrigation, follow up visits, emergency procedures, etc.  After getting everything straightened out, and our discharge papers completed, we finally left the hospital around 3:30pm.

***

Anna’s early evening was spent catching up with her siblings, playing board games, eating dinner, and watching a little TV.  We braved the process of MACE flush and suprapubic irrigation at around 7pm.  Once again, Anna was wary.  However, this time we let her use the syringes to put the water in both the MACE and the Mitrofanoff (tonight we irrigated into the Mitrofanoff and out through the suprapubic instead of into and out of the suprapubic).  She did a great job with the syringes and had little to no discomfort.  Tonight we heard the poop come out because it was hitting the water in the commode.  Anna was very proud of herself and seemed pleased with the situation, despite being sore from surgery.  We plan to change the surgical dressings in the morning, do a suprapubic irrigation in the morning, and do the Mitrofanoff/suprapubic irrigation in the evening after dinner, as well as flushing the MACE.  We are on Septra twice a day and Ditropan every 6hrs as needed.  The pain meds are every 4hrs as needed.

***

Sometime in the next couple of days I will take good pictures of our supplies and the surgical site.  Then I will try to do a step by step post on how we are following the procedures at home.

Anna plays "Don't Break The Ice" with Ben and Emily.

8 Responses to “MACE/Mitrofanoff Day 10- Home”

  1. Allue says:

    So glad you are all home :)

  2. Carol Hartman says:

    Yay!! My baby’s home with my other babies! It is so good to see her back home – sure hope and pray all the irrigating and flushing continues to go smoothly, and hope you all are able to get some rest!

  3. Cheryl says:

    so glad to hear Anna is home. Prayers for her to continue to heal.

    Cheryl

  4. donna carley says:

    good job anna!! glad you are home.. i know the feeling of being scared when you flush, i was too! sounds like you are doing great! you need to drink a LOT of fluids… keeps your bladder flushed out and thats very important! i drink bottled water cause its easier than just drinking from a glass. at least for me.. hope you continue to do great! my prayers are stil with you and your mom and dad.. way to go little girl:)

  5. Ginger Wyrick says:

    We are so glad to hear that you are ALL home. Keep up the great work Anna!

  6. Beth Cain says:

    Congrats on getting Anna home. Thanks for sharing this with us. Praying Anna’s healing is smooth and quick. What a trooper she is.

  7. Cassandra says:

    so glad shes doing better ;) we miss you guys <3 :)

  8. Susan says:

    Hello Annie Beth,
    It sounds like you are on the downhill side. I am so proud of Anna for being so brave and grown up. You both learned a lot about how to take care of her body this past year. I hope it gets easier each day.
    Miss you guys.
    Lots of love,
    Susan

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