JORDANS JOURNEY!!!!! I know many wonder what happened to my son,his condition and all the problems he endured!!!Jordan Taylor Paul was born a healthy baby March 6 th,2003.....SO WE THOUGHT!!!17 hours after he was born the nursery noticed his oxygen was slowly dropping and took him to the NICU UNIT where they realized spmething was wrong with his heart and needed to be Intubated and transported to UNC Childrens Hospital!!! I was discharged from hospital less then 24 hours after given birth.Wefamily all headed up to Chapil Hill where Jordan awaited us in the PICU UNIT on ventilater! Cardiologist told us our baby was born with 5 Heart Defects which was not genetic nor something you could detect while pregnant! I they didnt get him into surgery he would die!He had 2 holes in his heart ASD and VSD,Pulmunary Atresia.....main arterty never developed,Dextracardia which means his heart was on the right side and backwards and Transposition of his arteries....all his arteries were going in opisite directions! All his blood was mixing together!!He went through over 9 hours of open heart surgery so they could place a shunt where his artery didnt develop.Jordan was in surgery 5 hours and thought he was stable but the shunt clotted off and was rushed back in for 4 more hours!! My baby did great and we took him home 7 days later!!! Jordan did everything a normal healthy baby did :) he had another surgery at 6 months which we knew he would be having.....did great again and went home a week later :) Jordan was the sweetest happiest baby ever! I didnt work the first year he was born so I was with him all the time and have the best memories of that!! Jordan was due for his last surgery when he turned 2 yrs old.At 17 months old we took him to get a Heart Catherazation which is always done before a heart surgery to look at things and the functions of the heart!A week later Jordan had 2 massive strokes!He had blood clots from head to toe in his arteries and veins which they have never seen.He was back on a ventilater and dying!! Docs told us Jordan wouldnt make it through the weekend and to call all of our friends and family!! We all gathered in Chapil Hill watching our sweet baby lifeless!! They told us if he survived he would never walk,talk, or do anything,he would basically be living on a ventilater and trache!! We had to make a decision to take him off life support which of course thought that would be the end of his life!!He survived and we chose to take him home and care for him the best we could.We werent going to give up!Hospice awaited us as we got home,i didnt understand what hospice was! I remember them saying we need to start planning and making arrangments for his funeral.We werent having that,determined there has to be something to help our baby stay alive! Ended up with a wonderful pediatric home care nurses!! it was a long road and lots of hospital visits! Jordans strokes covered the whole left side of his brain and have of the right,he was no longer able to talk,walk,eat,sit,play,move!!!!!Jordan could no longer do anything completely disabled! We never gave up and gave him the best life he could possibly have and made everything as normal as possible!!!Jordan was our Miracle Baby and for 10 years we were able to love him unconditionally and care for him like no other!!2012 he ended up with a bad virus and began to sruggle off and on for months!! Docs tols us his body was wearing down and it was slowly coming to and end that we did everything we could for him! We were determine to find more answers and had multiple tests done but in reality I knew the Docs were right this time!We continued for months to take care of him and make him as comfortable as possible but each day things would get worse! All his organs were shutting down,a different one each day!We had to make the decision to not resesitate him but to keep him comfortable!! On April17th 2013 things just began to get worse and worse struggling to breath,low blood pressure,low heart rate and oxygen!Jordan was really dying this time!We all gathered as a family and our nurses surrounded his bed trying to make and hope he goes peacefully which didnt happen! we had to watch him struggle and take his last breath! I remember telling him that it was ok to stop fighting,he fought enough,it was ok to go Jordan!!Well Jordan died 5 something in the morning April 18th 2013!! Jordan was the strongest little boy I know and we all love and miss him dearly but at peace with him not suffering!! It will be a life long battle losing my son but im so blessed God chose me to be his Mommy!! I know this is long but wanted to share his story to others!!!
Posted on: Sun, 27 Jul 2014 16:22:36 +0000
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