The Ekstrom Family

Mandan, ND

$100.00 raised of $14,458.48

Mortgage/Rent $14,458.48

8 months

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Story

Name

Kya Ekstrom

Injury/Illness

Chronic Illness

We are the Ekstrom's, a family of six. Our 12 year old daughter, Kya, who has Von Willlebrands underwent a tonsillectomy and adenoidectomy on June 25th. On July 8th Kya woke with a severe hemorrhage on her right side at the tonsil site. She was readmitted to the hospital where she underwent surgery to cauterize the bleeding. A week after surgery Kya had a medicine induced seizure that put her back in the hospital for several days before being referred to a pediatric neurologist and hematologist where we found the medicine was incorrectly prescribed and administered. We were also informed that she had a narrowing of her esophagus due to scarring and a hematoma that occurred when the tube was put down her throat to pump her stomach during the cauterization surgery. A surgery to correct the unhealed cauterization site has been scheduled. Kya has spent her entire summer undergoing tests and receiving treatment in hospitals in Bismarck, Fargo and St. Paul. Thank you.

Family Updates

March 28, 2019

Mayo/Hemorrhage

So Kya hemorrhaged so she spent Christmas is St.Mary’s hospital in Rochester, MN (Mayo). She have another surgery this week to help with some of the bleeding. Then another surgery after some of the bleeding is under control as that surgery has high risk of hemorrhage. Right now it is a slower bleed daily.

March 28, 2019

Mayo Update

Kya had surgery again this past Friday at Mayo Clinic/St.Mary’s hospital. It seems to have slowed down one of the bleeds. We are so thankful. We are waiting for the genetic test to come back to see if she also has Ehlers Danos Syndrome. On top of the bleeding and clotting disorder that is so rare to have together.

They are giving her factor daily to hopefully keep the bleeding under control. Also a clot medicine which can be dangerous because of her clot disorder but doctors made the decision that the bleeding outweighed the risk at this point.

She will then need another surgery to try and stop the bleed and correct the adenoid/sinus area again.

March 28, 2019

Mayo Clinic/Operation

Kya had surgery this week at Mayo to help correct and find where her bleed is coming from. She will now need another surgery next week to search another area of her head.

She has been diagnosed with a clotting disorder called Protein S so could have a blood clot any time. With her bleeding disorder we are told only a handful of people in the world have both. Bleeding and clotting disorders.

She had genetic testing done yesterday. She shows all the signs of having Ehlers Danos syndrome.

This has been a very rough week with a lot of bad news.

March 28, 2019

Mayo Clinic

Kya has spent the last week at the Mayo Clinic in Rochester, MN. She will have two surgeries next week here at St. Mary’s Hospital. Her adenoid area needs to be reconstructed with the hope they can get it to heal shut.