Cyprianna's Medical Journey

As you may or may not be aware of, in August of 2016 Cyprianna had surgery at home in Alaska to fix a severe case of diverticulis that had been flaring up for years and was happening far too often so we decided to have elective surgery at that time versus the very high possiblity of having an emergency surgery for ruptured bowels at any time moving forward.   The surgery required removal of approx. 15" of her colon and small intestines, and also an anastimosis where the surgeon gave her a temporary loop ostomy which requires wearing an ostomy bag.  Needless to say Cyprianna is a very special patient because she was also born with a genetic issue called Ehlers Danlos Syndrome (EDS) which is a skin and tissue connectivity disorder.  Her surgery in Alaska resulted in a non-successful healing of the connection site internally so she still has her "temporary ostomy bag" at this time.  Her surgeon in Alaska, after us having a very difficult time getting any sort of support from him long term to get her healed up internally, finally agreed that it was time to look elsewhere for further medical / surgery care out of state because there is no other surgeon in Alaska that is qualified or able to perform her surgery again with such complex conditions.  

After much research - between her research and her surgeon in Alaska's input we were able to connect with Dr. Cima at the Mayo Clinic in Rochester, Minnesota.  Cyprianna recently went for a week of testing at the Mayo Clinic and met with Dr. Cima on Friday June 2nd.  She was going to come home to Alaska that afternoon after her appointments until we were able to get her surgery scheduled to basically re-do the original procedure again.  He was able to get her in to surgery fast and she had surgery on Monday June 5th at the Mayo Clinic.  I flew to Minnesota on very short notice with help from a close friend using air miles the day before so I could be with her.  We were hoping she would have been released from the hospital by Sat/Sun 9/10th but she's been having a few complications that are keeping that from happening.  Once she does get released from the hospital, she will have to spend approx. 1 week there in a hotel to stay close by before she can fly back home to Alaska.

Once she gets back to Alaska, if all goes well we are looking at having to send her back to Mayo Clinic in another 3 months (estimating at this point) to reverse her ileostomy so she can get rid of her "temporary" ostomy bag.......mind you, this is if she heals correctly this time.  The surgeon at Mayo did use reinforcing mesh and re-connected her tissue in a different manner than the surgeon in Alaska did the first time so we are keeping our fingers crossed and saying lots of prayers for proper quick healing this time!!  Then back home to Alaska again to recover from that procedure.  On top of all this, she has developed a hernia on her side near her ileostomy that will need to be fixed in a third trip to Mayo whenever we get to that point.

Needless to say, we have medical coverage for our family but will surely be hitting our annual maximum out of pocket amounts.  We will also be incurring a lot of air travel, hotel, meals, shuttles, parking, etc expenses that are not covered under insurance.  We've had many people reach out and ask how they can help, which is why I'm setting up this GoFundMe account.  This way those of you who would like to and are able to donate financially to help us through this difficult time with the very large out of pocket expenses we are incurring can do so with no pressure or obligations to do so.

We are praying for a fast, full recovery for Cyprianna.  Reality is with her EDS, she heals much slower and differntly than the average person.  We can use any and all prayers and support possible to get through this long difficult journey.

Thank you from the bottom of our hearts,
Karl and Cyprianna Greninger