fast forward after 3 beautiful months Jack's open heart surgery
My child died suffering after two months of pain in the ICU. His name was Jack Damian Wilbee, he died march 3 2011 just 20 min before he turned five months. He was born with Down Syndrome and he was perfect and beautiful with the best smile in the world. He was are only child and were so happy to have him. We were told he had holes in his heart and a small ventricle- AVSD, a defect common with Down Syndrome children. They were very confident about fixing it.
On Jan 4th he went to the hospital at 3 months old to have open heart surgery. Everything went wrong after that, he had every complication there was arrhythmia, his kidneys stopped working from being on life support during the surgery , he survived two infections and a perforated bowel which they fixed by giving him a stoma his bowel was hoisted to his stomach and placed outside of his body where he pooped in a bag.
Then in Feb they told us he was on the road to recovery -go home they said , sleep for a night do your banking. We did. The next morning he had a heart attack; they don't know why. We came in as they were trying to resuscitate him.
After 40 min the doc made a decision out of pure emotion and because of us; he put Jack on life support for five days. It worked Jack came back and was taken off support but with massive brain damage,and also Cerebral palsy. He was awake and could feel but they predicted would not progress beyond this point.The docs think could not see except bright colors and no one knew if he could hear.We were thankful just the same our son was still alive we could still take him home and make him happy.
A week later they took the intubation breathing tube out and underneath all the tape on his face they realized he had a severe allergic reaction. They knew he had an allergy to that specific tape prior to using it. We found that out very early on. The skin had burned through leaving no cheek left, it was a huge gaping hole to the bone from under is eye down to his jowl, he then got an infection in the wound. He only lost the one side of his face because when they intubated him they taped over the safe tape that was already holding his ng tube in place on the other side of his face.
He had holes and tubes throughout his body for his bowels , for his dialysis and for his medication and there was nothing left of his cheek he also had dislocated ribs from the CPR. A few days after that they told us his kidneys would never regain function after being resuscitated and his bowels weren't working right. His heart was also failing again. They told us he was no longer a candidate for dialysis, he had too many complications he was dying, they only give dialysis to children that have a great percentage of living until the kidney transplant which is at least 3 yrs and even that you have to qualify for.
On March 3rd in the morning we took him to a child palliative care home, we could not take him home it was to far and his pain could not be properly managed there. He died in my arms 20 minutes before he would have turned five months at 11 40 pm.. It had been 11 hrs or more. It was long, he went blue allot then would start breathing again but very badly. They said he felt no pain and they gave him allot of pain meds but I don't know for sure what he felt and even though he was in my arms I don't think he was aware of it. He kept trying to breath until finally he stopped.
All this happy child knew was that his mom had given him to strangers who did bad painful things to him, he was 3 months old at the time he went into the hospital and that's all he would ever know. I see his pain and suffering in my head everyday like a horror show. He was my only child and I have no more purpose in my life. My husband and I cant even think of the future when we are just trying to make it through each day. There is nothing left but emptiness and memories of my little misters suffering and his hard struggle to survive. The will to keep going everyday is draining, my heart is broken but still keeps beating and I wish it would stop. I see only what happened over and over in my mind. I see him looking at me wondering why I took him from his home,why I gave him to strangers and why are they hurting me. That's all that goes through my mind everyday.
http://en.wikipedia.org/wiki/Atrioventricular_septal_defect
On Jan 4th he went to the hospital at 3 months old to have open heart surgery. Everything went wrong after that, he had every complication there was arrhythmia, his kidneys stopped working from being on life support during the surgery , he survived two infections and a perforated bowel which they fixed by giving him a stoma his bowel was hoisted to his stomach and placed outside of his body where he pooped in a bag.
Then in Feb they told us he was on the road to recovery -go home they said , sleep for a night do your banking. We did. The next morning he had a heart attack; they don't know why. We came in as they were trying to resuscitate him.
After 40 min the doc made a decision out of pure emotion and because of us; he put Jack on life support for five days. It worked Jack came back and was taken off support but with massive brain damage,and also Cerebral palsy. He was awake and could feel but they predicted would not progress beyond this point.The docs think could not see except bright colors and no one knew if he could hear.We were thankful just the same our son was still alive we could still take him home and make him happy.
A week later they took the intubation breathing tube out and underneath all the tape on his face they realized he had a severe allergic reaction. They knew he had an allergy to that specific tape prior to using it. We found that out very early on. The skin had burned through leaving no cheek left, it was a huge gaping hole to the bone from under is eye down to his jowl, he then got an infection in the wound. He only lost the one side of his face because when they intubated him they taped over the safe tape that was already holding his ng tube in place on the other side of his face.
He had holes and tubes throughout his body for his bowels , for his dialysis and for his medication and there was nothing left of his cheek he also had dislocated ribs from the CPR. A few days after that they told us his kidneys would never regain function after being resuscitated and his bowels weren't working right. His heart was also failing again. They told us he was no longer a candidate for dialysis, he had too many complications he was dying, they only give dialysis to children that have a great percentage of living until the kidney transplant which is at least 3 yrs and even that you have to qualify for.
On March 3rd in the morning we took him to a child palliative care home, we could not take him home it was to far and his pain could not be properly managed there. He died in my arms 20 minutes before he would have turned five months at 11 40 pm.. It had been 11 hrs or more. It was long, he went blue allot then would start breathing again but very badly. They said he felt no pain and they gave him allot of pain meds but I don't know for sure what he felt and even though he was in my arms I don't think he was aware of it. He kept trying to breath until finally he stopped.
All this happy child knew was that his mom had given him to strangers who did bad painful things to him, he was 3 months old at the time he went into the hospital and that's all he would ever know. I see his pain and suffering in my head everyday like a horror show. He was my only child and I have no more purpose in my life. My husband and I cant even think of the future when we are just trying to make it through each day. There is nothing left but emptiness and memories of my little misters suffering and his hard struggle to survive. The will to keep going everyday is draining, my heart is broken but still keeps beating and I wish it would stop. I see only what happened over and over in my mind. I see him looking at me wondering why I took him from his home,why I gave him to strangers and why are they hurting me. That's all that goes through my mind everyday.
http://en.wikipedia.org/wiki/Atrioventricular_septal_defect
