Ellie’s Accident surgeries & healthcare Costs

Note: the surgery is finally happening!!

For a “quick” overview of issues:
~Ellie's necessary future gut & vascular surgery at Cleveland Clinic (vascular = veins, vessels, arteries) she’s in gut and liver failure currently, worst case of malrotation & vein/artery case her specialist surgeon said he’s ever seen (the only surgeon/dr of his type out of anyone in of the world)
~Her Level 1 (worse case) car accident which resulted in multiple brain, artery, and orthopedics injuries & a 2 month hospital stay
~Her genetic EDS - Ehlers-Danlos Syndrome that has been affecting her for a very long time and adds to the other problems plus their medical costs. She has multiple forms including heart related problems & is awaiting more genetic testing. There is no cure but it must be managed as to not get worse. 

Ellie, as known by many of you, has a collection of medical problems. One of the biggest, lifelong problems are in Ellie's belly (which also was her childhood nickname!). Two years ago, we found out the gut, it's arteries and veins are not in the right places, twisted around and malformed  We already knew she was born with these problems & had previous surgeries, but didn’t know it had gotten this bad, especially with the arteries & organs so bad. She is in gut and liver failure and needs a rare, necessary surgery done by the doctor who invented it at Cleveland Clinic (curious about his work, see https://my.clevelandclinic.org/staff/17281-kareem-abu-elmagd#biography). Right after we visited Cleveland Clinic for costly tests and workups, Ellie was in a Level 1 (life-threatening), motor vehicle accident which greatly added to healthcare needs and expenses. She received multiple brain injuries, multiple arterial injuries, and multiple orthopedic injuries that all need help and rehabilitation.

Both of Ellie's carotid arteries split and found an aneurysm in her brain. Drs are getting image scans regularly. Via Christi & other hospitals have never seen someone survive this so her other medical problems could have caused this and maybe the accident. The EDS also could have prevented her from dying as she was unresponsive. Ellie had about 3 weeks of memory loss, and from the police report and conversations, they found Ellie was not on her phone, text or vocal, witnesses said that she was driving straight, not swerving, so the vascular problems could have caused the accident. It’s been hard for Ellie to not know what happened, but is optimistic and hopeful about the future!

Ellie was born with two congenital (at birth) disorders - the EDS and malrotation of the small bowel. This not only twists the bowels and can lead, almost did, to death but also to a lot of problems with obstructing and partially obstructing the intestines which have both happened multiple times, bowel function, pain, digestion, and vascular problems. Last year, we found she has severely abnormal blood vessels and mesenteric arteries that led her to gut and liver failure. At Cleveland Clinic, we learned a lot more. She has been in gut-failure for awhile and no matter how she looks, is not absorbing nutrients or vitamins from food or supplements. We were scheduled for surgery quickly as a high-priority case. The accident prevented the surgery from happening. Only one doctor in the world does this particular surgery, the rareness bumping up the already expensive cost of the pre-op, operative and post-op, recovery and tests. The motor vehicle accident has led to a long delay of the needed surgical intervention, and requires repeats of the tests and trip we did at the beginning of December. We were coached and counseled by the Intestinal Transplant Team at the gut clinic to crowdfund for the gut and vascular surgery, since so many things about it are not covered by insurance, cannot be performed by other surgeons, and would take more time than just a surgery. Apologies to the multiple medical problems that found their way into this fundraiser. Here are some links about the gut rehabilitation surgery: https://pages.clevelandclinic.org/intestinal-transplant-index.html?_ga=2.82717270.194850565.1583118476-1030275177.1583118476
https://my.clevelandclinic.org/departments/transplant/programs/intestine/overview

One common factor underlying all of these issues and medical diagnoses is genetic Ehlers-Danlos Syndrome or EDS. Ellie was diagnosed by multiple professionals in the last few years. She has lived with and accepted it and the belly issues her entire life, contributing to a multitude of healthcare costs that will continue throughout her life. She has multiple forms of EDS as there are about 15 forms. One is hyper-mobility and one is vascular, (blood vessels, arteries, heart). One thing that EDS affects is the connective tissue of the body which is all over. It also makes recovering, healing, and functionality much more difficult. All of this requires more help for recovery and some level of functionality which already has added up to be mountains of expenses. More info on EDS: https://www.edskc.org/
We have been in this medical journey, often a mystery, together as a family. We are all very thankful for your support.
I (Ellie) am deeply thankful for the cards, messages,  flowers, and visits I received from  lovely people, my great friends, and family. I’m wishing you all the best in this wild world!
Thank you more than words can say, Ellie, Bob and Nancy