THIS IS MY STORY . . .

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Oct 27, 2017

Hello friends,

 

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!

 

Post written byKerissa

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This post has 2 comments

  • Rosalie Baugh
    says:

    Hi Kerissa! So sorry to hear that you are facing a major surgery, and the attending stressful details surrounding it. There’s just nothing fun about having surgery :o( Home for Christmas seems like a great goal–your health will be a gift for everyone! Thanks for sharing about the communication struggles. Honestly, it’s not surprising considering the scope and complexity of your medical care–I admire anyone who can keep all your details straight (most of all, you!) So I’ll pray concerning that request, and also that you can rest, take nutrition, sleep better than usual, and anything else that leads to your being as strong and ready as possible for this necessary insult to your body. Can they give you an epidural block so that you don’t wake up with all the surgical pain, or does that complicate other conditions? Sure wish you had something more fun to look forward to–plan a vacation to Hawaii for next Christmas!
    Robert and I traveled in Washington and Idaho last week to explore new areas. It’s true that the rolling hills of the Palouse region have their own beauty, but I am quite attached to the green of our valley. We live in a beautiful setting. As I finish this, I’m glancing over and admiring your many photos, included with each blog post. You obviously have an eye for beauty as well, so I’ll encourage you to enjoy the fall leaves and colorful trees. As long as you don’t have to rake them all up, it’s gorgeous out there in the sunshine! Love and Prayers, Rosalie P.S. Please give my greetings and assurance of my prayer to Karina–thanks!

    • Dear Mrs. Baugh!

      Thank you so much for your message! 🙂 And your prayers—they are so needed right now. It’s been really hard/emotional lately re: these new communication issues with 3 of my doctors. This has never happened before. 🙁 And tomorrow is a big appointment to meet with one of them.

      And I’m not sure yet about a block for the surgery….I am supposed to see/or talk on the phone with the anesthesiology team sometime in the near future, and I will make sure to ask those questions. 🙂

      And yes, a vacation does sound amazing! A very kind and caring friend of the family (he’s like an uncle to me) is paying our way to go to DisneyWorld (would be my first time!) next year, and we planned for it to be in February….not sure if it can still happen with surgery in December….but it sounds like we’re still planning on it! 🙂

      Hugs,

      Kerissa

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