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Dylan has been on a long journey the past week and a half. What has happened from start to today.
Both of Dylans legs have 100% blockage from his hips up to below his heart. Tiny clots have been forming little by little over quite some time and there is now 100% blockage. He went to Hutchisin ER on Saturday and they attempted surgery to remove a blood clot on his left leg on Tues. The clot moved from his leg into his abdomen and the doctors couldn't do the surgery. He was at very high risk for pulmonary arrest and we were very scared. On Thursday they attempted surgery again and found that the right leg was also blocked. They couldn't do surgery after 2 attempts and felt that something else was going on. We were lost! They ordered a CT scan and figured out that Dylan does not have a Inferior Vena Cava. He was not born with one. This is a filter for the blood that is located below the heart and goes from the heart to these viens that are blocked.
So why hasn't Dylan had any problems before now??? Dylan's body over the years has developed a web of tiny viens to supplement blood flow and has, up until now, been sufficient enough. The Cardiologist had Never seen anything like this. And they were very stumped at the whole thing. So they started researching it more and found out that it is Extremely Rare. There have only been 64 known cases since 2000.
Dylan was then flown by medical plane to the Mayo Clinic in Pheonix,Az. Where 4 drs looked at his case. After 2 attempts to unclot the clot. They have decided that they have done all that they can to help him so 4 surgeries later the Drs can't do anything more for him. They said they have done more for him than they would have someone older and he is also a very RARE case without the inferior vena cava. He will be put on Coumadin and he will have to wear some TED hose for a long time or the rest of his life. His diet will change. His life style will have to change and he will go home with meds to manage the pain. He will be here until his Coumadin is at a theraputic level and he can walk on his own. Maybe just a couple days left. God let him be here for 26 years with this now it is in his hands for 50 more. Thank you
Anything you can do to help would be greatly appreciated.
Both of Dylans legs have 100% blockage from his hips up to below his heart. Tiny clots have been forming little by little over quite some time and there is now 100% blockage. He went to Hutchisin ER on Saturday and they attempted surgery to remove a blood clot on his left leg on Tues. The clot moved from his leg into his abdomen and the doctors couldn't do the surgery. He was at very high risk for pulmonary arrest and we were very scared. On Thursday they attempted surgery again and found that the right leg was also blocked. They couldn't do surgery after 2 attempts and felt that something else was going on. We were lost! They ordered a CT scan and figured out that Dylan does not have a Inferior Vena Cava. He was not born with one. This is a filter for the blood that is located below the heart and goes from the heart to these viens that are blocked.
So why hasn't Dylan had any problems before now??? Dylan's body over the years has developed a web of tiny viens to supplement blood flow and has, up until now, been sufficient enough. The Cardiologist had Never seen anything like this. And they were very stumped at the whole thing. So they started researching it more and found out that it is Extremely Rare. There have only been 64 known cases since 2000.
Dylan was then flown by medical plane to the Mayo Clinic in Pheonix,Az. Where 4 drs looked at his case. After 2 attempts to unclot the clot. They have decided that they have done all that they can to help him so 4 surgeries later the Drs can't do anything more for him. They said they have done more for him than they would have someone older and he is also a very RARE case without the inferior vena cava. He will be put on Coumadin and he will have to wear some TED hose for a long time or the rest of his life. His diet will change. His life style will have to change and he will go home with meds to manage the pain. He will be here until his Coumadin is at a theraputic level and he can walk on his own. Maybe just a couple days left. God let him be here for 26 years with this now it is in his hands for 50 more. Thank you
Anything you can do to help would be greatly appreciated.
Organizer and beneficiary
Dylan Beisel
Beneficiary