MACE/Mitrofanoff Day 16- Home Routine (irrigation, dressings, etc)
Home at last. And now to figure out how this all works in the real world….
Since coming home on Sunday, we’ve gotten into a routine. We started doing things one way, adjusted, adjusted back, and so on. We’re really still in a state of flux, but we have things mostly under control. Anna takes Bactrim twice a day, and has Tylenol with Codeine and Ditropan to take as needed. Anna flushes the MACE in the evening, but sometimes we flush it in the morning as well- depending on her diapers. We are drawing warm tap water out of one of those pink hospital buckets. 150ml is all we use for now. The water goes through almost immediately. After the MACE in the evening, (and in the morning, whether or not we do the MACE) we irrigate the suprapubic catheter. In the mornings, we flush about 30-40ml of sterile water through the Mitrofanoff. It comes out the suprapubic. Then we cap the Mitrofanoff and irrigate the suprapubic with about 40ml (draw up 50 and then push in the amount she’s comfortable with and draw it back out- this same water may get pushed in and out 4 times, or if it get gooey, we may get fresh water and do it a second time). In the evening, we do not flush the Mitrofanoff, we just irrigate the suprapubic after the MACE. Bandages get changed about once a day. The stomas tend to ooze mucus, which is normal. Redness and fever would be cause for concern of infection. Goo alone is just goo. You can gently wipe it away with a Q-tip, or wash it away with sterile water.
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Anna is in charge of all the syringes. This makes her feel a lot more comfortable. While an adult does the drawing in and out for the irrigation, Anna pushes the initial amount in to make sure it’s something she’s comfortable with. She also controls how fast the water goes into the MACE. She has good fine motor skills and is adept at controlling a syringe. Here are some pictures of our setup.
First dressing around the MACE/suprapubic.
Mitrofanoff
MACE and suprapubic catheter
Putting the first dressing around the Mitrofanoff.
Second dressing taped over the first.
Tape over second dressing extends across to the Mitrofanoff side.
We put a diaper over the dressings. The cap to the tubes are sometimes more comfortable on the outside.
We brought plastic drawers into the bathroom to keep the supplies.
Our Rifton toilet to shower chair.
Syringes for irrigation and flushing.
A box of stuff we are supposed to need after the tubes come out. The hospital ordered it, so I don't really know what's in there.
Sterile water for the bladder. We pour it into the smaller sterile cup (to the left) to draw it into the syringe.
Clean (but not sterile) tub we use to hold the warm tap water for the MACE.
So there you have it. I’m sure this will all change in a week. We have our second post-op visit next Saturday. I’ll update again when we get back from that appointment.
boy i have been there and done this!! believe me it gets easier as the days go by… i have a routine that i do as well.. its just part of my life.. but in the long run you and anna will be glad you did it. anna is still in my prayers.. what a brave and strong little girl she is .. !
Hang in there…once the tubes come out life gets easier…..
I’m so glad your home. Thanks for the updates. I feel very thankful that you have shared this process with us. I now know what to expect when we go for Naomi’s in March. Hope you all are doing well.
Thats great your home
We use a kangaroo gravity bag to put the water in and attach the catheter to it.