ZAYDEN EAGLE PLUME BORN September 20,2013 to Josie Eagleplume Zayden was born with Urea cycle disorder which is hereditary it is a missing gene with in the DNA this condition does not allow ammonia to exit the body . Most children with severe OTC do not survive past the first week stage. Ammonia takes over the body goes directly to the brain and causes severe brain damage which then shuts down the body. Arnold and Bianca Mountain horse took on the roll to become Zaydens gaurdians along with Josie the Mother whom is there foster child from there it was there responsibility to do what ever was possible for baby zayden being that Josie was a young mother with her own complications.They became so attached to him and josies they tried very hard for the both of them and raising there own children. In Zaydens case he has defied all the odds he was born with severe OTC. On September 21, 2013 he was brought to the Emergency Room only thinking he had colic and he couldn’t hold down his formula . That is when he was sent to Lethbridge By Monday morning he was hooked up with all sorts of lines something you see in horror shows. At the sight we all caved and cried we couldn’t believe what we saw. Our baby what is happening to him we just got him home from the hospital its not supposed to be like this. About 1:00 p.m. that afternoon he was being flown to Alberta Childrens Hospital in Calgary Albeta where there was a Doctor that specializes in this conditions. It was touch and go the first few months he had to remain on dialysis to keep his ammonia down so it would not effect his brain and cause brain damage. Febuary 2013 we were sent to Edmonton to do an assessment to try to get on the donor list which was a complete failure. The Dr’s in Edmonton turned him down saying he wouldn’t survive the operations he had a bad heartvalve that would have to be fixed before they reconcider him They gave me the option just to bring him home an let the ammonia take its course and put him in a palitive care facility and let him slowly pass away my heart was ripped out I couldn’t make that call. I told them only god himself can determine where zayden is going to go . I told them you do what ever you can do for him . In may 2013 Dr kahn did a test on him which might or might not work but it was to help prolong his life until he can receive a liver it was A liver cell transfusion where liver cells are inserted in the liver to help fight off the ammonia and keep it stable well we had to prepare that it might not work but he would get really sick off of it he may not pull through well we got the call from Dr Kahn he was not doing well they weren’t sure if he was going to pull through the weekend we stayed there night and day praying hoping for a miracle well I think god heard us he pulled through the liver cells started working his ammonia levels were stable he didn’t need dialysis just went he got a virus his ammonia would go up but not severely. Now if he was to even get a common cold even that can kill him but lucky each time he made it through them rough times. well in march of 2013 we were back in Edmonton for the Heart Valve surgery the Doctors did not think he was going to pull through they told us to prepare for the inevitable. There would be complications he can bleed out he can have high ammonia where it would cause seizures and die. We patiently waited in the waiting room my mind was all over the place but I sat there and prayed that was all I had was my faith in god I prayed so hard and the waiting was painstaking about 4 hours passed then another 3 we were waiting finally I went to see if he was out and sure enough he was in the recovery he came out with out the complications the Doctor said “ its amazing how he came out of the Surgery its unbelievable” We were there for a another week and they sent him back to childrens hospital in Calgary. By now were getting so used to the preperations it’s a rollercoaster ride but were so used to hearing he may not pull through be prepared. We had to wait for another assessment on if he can get on the donors list well it came back and it was a NO we have to find a living donor. Which is unlikely . I felt like they just wrote zayden off they don’t see him having a life why for us he is full of life I cant give up on this little man not yet. His life depends on me. I came home to be with my children sad thinking oh my god I am going to have to start preparing for Zayden to never come home . I myself and my husband sat at the kitchen table in tears thinking what are we going to do then bam a call came in . It was Dr. Kahn he said Edmonton will not take him then Toronto will. He said there is no way I am given up on Zayden he is full of life I go into his room hes laughing smiling yelling there is no way I can give up on him now. At this time Zayden is reaching (6) months of age the age where previous years was the oldest living child with this conditions. We braced ourselves for what is coming next. Well he passed that age. Still being the crazy silly little guy that he has always been in Edmonton he had this nurse I truly like he would always say Zayden is the loudest kid on the block . we laughed. So now we are just waiting and seeking out people that have O type blood in hopes to reach someone out there that will consider being a donor for Zayden this Little man has defieted all the odds against him he is truly a fighter. We have a facebook page full of his story . As of today we are waiting for the referral of our departure to Toronto with in the next (2) weeks we are scheduled to leave for Toronto for his assessment to get on the program for the donors list for a liver living or non-livng donor we are hoping and praying that this all works out its been a long year for us and Zayden Zayden has faught long and hard to survive he is a survivor we are sharing his story in hopes to one day have a cure for other children that suffer this rare condition thank you for all the family and friends support. This is Zaydens story to today……………
Posted on: Thu, 16 Oct 2014 14:00:42 +0000
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