Dec. 30, 2018, 5:02 p.m.
So Kya hemmoraged 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 hemmorage. Right now it is a slower bleed daily.
Dec. 30, 2018, 5 p.m.
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.
Dec. 21, 2018, 2:20 p.m.
Kya had surgery this weak 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.
Dec. 15, 2018, 8:56 a.m.
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.