Next Tuesday we will be traveling to a Children’s Hospital where Ren will have two surgeries: the MACE and the Mitrofanoff. She will have the actual surgeries on Wednesday, and she will be in the hospital at least 5 nights.
Ren has a neurogenic bowel and bladder – as many individuals with spina bifida have – meaning her bowels and bladder do not function normally. Because of the damaged nerves that control the systems, she cannot control them – she cannot fully empty her bladder & bowels on her own nor even really feel when she has to “go.” And because of this issue, we have been catheterizing her since she was around two years old (now up to 4-5 times/day), and we also have been administering a cone enema to her for about a year and a half, which we do every other night to clean out her bowels – after being “flushed” with water administered through her bottom, she sits on the toilet for 30-45 minutes while it works out the poop.
The two surgeries she is having next week will provide alternate “routes” for these necessary tasks:
The MACE stands for Malone angegrade continence enema. A pathway will be created directly into her colon, to allow for the “flushing” of her bowels through the abdomen area, rather than “down below.” She will still sit on the toilet for 30-45 minutes every other night to do this, but the advantages are that it will allow her to be able to do the flushing/cleaning of her bowels more easily on her own, which of course leads to better independence, and it will do a total and better clean out of the colon and bowels, since it will be flushing it downward, rather than upward like with the cone.
The mitrofanoff procedure will create a pathway directly into her bladder, to allow for cathetorization also through the abdomen area, rather than “down below.” Again, though Ren could be taught how to cath herself “down there,” this will make it a whole lot easier, more privacy for when others need to do the cathing, much faster (just lift up the shirt) and of course providing her with much more independence. If she ever ends up being totally wheelchair bound (which I hope will not be the case, but am aware that it might), it will make this task much, much easier for her then.
For at least one of the surgeries, they will try to use her appendix as the stoma (pathway). In the rare case it is large enough for both stomas, they will use only the appendix. This would be the ideal case, for if they cannot use the appendix for both, or for neither, they will have to use part of the intestine, which just makes for harder recovery, since they will be slicing off a piece of an organ, rather than just removing the appendix. So, prayers that her appendix would be of sufficient size to use for at least one (but preferably both!) stomas would be awesome. By the way, I guess there really IS a use for the appendix, huh?
Almost everything I have read about these surgeries has been good. Most parents and patients have said it is totally worth doing. However, I have also read the recovery is not fun…painful…hence being in the hospital several nights afterwards. After the surgeries, she will have a catheter placed in the stomas to keep the pathways open, for about six weeks. This means no swimming or baths for another six weeks after surgery. Ren is also still in her leg cast from the foot surgery, though she will be getting the cast off in a couple of weeks.
Please pray for the surgeries to go well, without complications. Pray that her appendix will be able to be used. Please pray for a quick recovery. And please pray that her foot is healing correctly.
I will provide updates after the surgeries. Thanks so much for your prayers….
“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Phillipians 4:6-7