Ren had her MACE and mitrofanoff surgeries a week ago Wednesday, on April 3. They went well, and we were home after five days in the hospital.
On the day before surgery, they had to do “bowel prepping,” so she would be all clean on the inside to make for a safer and easier surgery. She had a tube put into her nose for administering a medicine that would assist in moving the bowels for the cleaning out. It seems most – or all – kids HATE the nose tube being put in, and there’s lots of crying — understandably. However, Ren only gagged and coughed a little, blinked a lot, and that was that. All of the nurses were pleasantly shocked. She also had an IV inserted to keep her hydrated, and she did well with this, too. Strangely, the only time she cried was when, later, they hooked up the IV, which does not involve pain or discomfort at all. I wondered if she realized she would now be stuck…and didn’t like it! Anyways, after being all set up, she eventually starting pooping….a lot. At one point, she was sitting in a pool of liquid poop on the bed. Sorry, but if I had to see it and she had to sit in it….you get to read about it. We transferred her to the toilet after that — and she sat there for about an hour, or maybe two, I can’t remember, with T or I sitting nearby. She played the I-Pad for most of that time….not much else for her to do easily there. The whole process took about 3-4 hours from start to finish.
The following morning she went in for surgery around 10:30. While in the pre-op room, waiting for them to take her away, she was acting so calm, and silly, that several staff member assumed she had the relaxing medicine already. Nope! She was just being herself. After she was wheeled away, we went up to the waiting room, and prepared for a 4-6 hour wait. We occupied ourselves with the I-Pad, reading, Sudoku puzzles, checking email, and having lunch with friends, and with periodic praying. Five hours later, the surgery was complete, and the surgeon came to talk to us. He said everything went well. They were able to use the appendix for one of the stomas, for the colon/bowels, I believe, but they had to cut from the intestines to create the stoma for her bladder. Though a little disappointed, I know this is what commonly happens. What it meant was a longer recovery, because after being cut into, the intestines stop working temporarily, while it heals. She had a different, bigger nose tube in, that was sucking out the stomach juices, since they couldn’t go down into non-working intestines, and if they just sat in the stomach, she would eventually throw it up. She would need to keep the tube in for about 2 days, which is usually the amount of time it takes for the intestines to “wake up” from it all and start working again. They check this by listening for gurgling sounds. Very high-tech. The surgeon said it is after this happens that recovery really speeds up.
The next couple days, Ren was very, very quiet and subdued, and had no smiles. She did not act like she was in a lot of pain, though she had plenty of pain medicines, and did whine about her tummy hurting at times, to which we responded with pushing the morphine button. However, sure enough, two days later, her intestines woke up, and she got to have the nose tube out. A couple hours later, she was smiling and talking again. And by evening, she was eating pancakes. This whole time, by the way, she was either playing with play dough, coloring, playing with Legos, while watching a princess movie…..I mean nonstop. We had a nice visit with a college friend, followed by a visit from my brother and his family, and the next day, we had the ok to go home.
The colon stoma has a short tube coming out of it with a cap on it. We are doing her bowel flushes through this for the next 6 weeks. She still sits on the toilet like she used to, but now I can insert the fluid through the little tube in her abdomen (colon), instead of having her lean over and administering it through….you know where. The bladder also has a tube coming out from it, with a urine bag attached instead. My mom modified a little canvas bag to fit the urine bag in, so the pee could be hidden from view (see pic). We are not needing to do any cathing right now, as while she has the urine bag, we just need to empty the bag every couple of hours. After these 2 weeks, they will take off the urine bag, and we would then start cathing through the shorter tube for the next 4 weeks. After these 6 weeks are up, they will take out both tubes, and we will use just the “holes,” or stomas, for her bowel flushing and cathing. They need to keep the tubes in for that long to help keep the holes from closing up, kinda like when you get your ears pierced, I figure.
So. Ren is doing great — She was tender in the abdomen area for a couple of days, but she has been wearing a white “binder” wrapped around her torso (given from a friend whose son had the same procedures done a year ago) which keeps the tubing more secure, and she really likes that added support it gives her. Next Thursday we go back to the Children’s Hospital for a follow-up appointment and to have the urine bag taken off.
She is not moving around too much yet, which worked out well because she also got her leg cast (from her foot surgery) off this week. We are weaning her back into standing on her leg; due to her past fracture history after leg surgeries, we want to take it slowly.
It has been an eventful month for Ren, but in another month, when her leg is back to normal use and her stomas are healed up and able to be used the way they are intended, things will be really good. And just in time for summer, too!
Thanks for all those who have been praying for her. We are blessed by all of you.
Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.