I recently had a long appointment with my urology surgeon at Doernbecher’s. She explained how this is a very major bladder surgery….and I was so shocked to hear her say that this surgery can last up to 12 hours….(for example, it could start at around 7:30 AM but not end until 7:30 at night)…! :O It’s so scary to think about, but this surgery is so needed to protect my kidneys/bladder long-term. I never really described the surgery or even told you what it’s called, but I will try explaining it now.
This surgery is called a Mitrofanoff. My surgeon will reconstruct areas in my abdomen so that a tract can be made from my bladder to the surface of my abdomen. Usually, the appendix is used as the tract, but we recently found out some not so good news from my GI specialist. He looked at a past CT scan that I had done and measured my appendix. My appendix is only 1.5 cm (just half an inch). 🙁 In normal people, it measures from 9-20 cm. This once again shows how rare I am.. 🙁
This means that my appendix is too short to be used solely as a tract. My surgeon did say that she won’t know for sure what she’ll do until I’m “opened up.” Most likely, though, she will try to use my appendix but also use my small intestine. She’ll form a tract from the intestine and connect it to the appendix. She said this will mean a much longer surgery time. At first, she thought it would take an average of 6 hours only, but now it looks like the surgery will be longer than that..
With this newly made tract, I will be able to insert a catheter through it and empty my bladder that way.
My potential surgery date is December 13th, but she’s first working on getting clearance from all my other doctors. It’s a long process. And I will need to be admitted the day before surgery to get “cleaned out.” In other kids, they’re usually inpatient from 5-7 days after surgery, but it will probably be much longer for me because of mito. 🙁 I really hope I’ll be home for Christmas, though!!
My doctor said I need to be the healthiest possible because this surgery is really hard to go through.. 🙁 So many complications can happen which is why I need a lot of prayer going into this! I will share prayer requests down the road as I learn more..
There have been many other medical issues going on and even recent problems with part of my care team….it’s really hard and long to explain, but I will say this—please pray that my whole medical team will be on the same page with me! Communication between my doctors (including me as well) hasn’t been that great lately. This has been really stressful with lots of tears. 🙁 If all can be coordinated, some of my doctors will be meeting with me (called a care conference) to talk about these issues..
Thank you so much for continuing to pray for me! It means the world!