We are so happy we are going to be working with the wonderful team in Seattle. Dr. Torgerson is amazing!! He discovered the Ipex gene mutation and holds all of these children near and dear to his heart!! He has already been so helpful and Sonny isnt even his patient yet!! I wish we went to Seattle in the first place but Boston was very convincing that they could handle Sonnys disease and we felt comfortable staying in a number one hospital that promised if problems arose they would ask for Seattles advice. They told us they did but turns out they did not contact their transplant team even once during Sonnys entire hospital stay! We trusted them and they pulled the wool over our eyes doing whatever they thought would work but regarding Ipex the choices they made were wrong. Huge mistakes were made that could have been prevented had they contacted Seattle! Instead they chose to treat him like a cancer patient and almost killed him :( We are just blessed we got a second chance many arent that lucky!! We cannot second guess ourselves though. We chose this hospital and are thankful that as an infant when we brought Sonny in the GI team knew immediately that something was wrong and saved our sons life by acting quickly and asking us to put our trust in them and we had an amazing nursing staff that fought with us when we knew things werent right and the transplant doctors couldnt see it. They are the reason he is here today and for that we will be forever grateful! Even still a select few of his outpatient doctors are wonderful! They listen and want whats best for Sonny but too many, especially the bone marrow transplant team, are closed minded and cant wrap their heads around the fact that they do not know everything when it comes to ipex but no one does! this disease is rare and each child is different and cannot be treated the same as all of the other transplant patients. We just feel blessed and beyond lucky that Sonny beat all the odds and is doing well despite the mistakes that were made!! We are doing the best we can everyday and hind sight is always 20/20 but I am trying my hardest and I can promise that I will always stay on my toes and fight to get my son the best care possible no matter what it takes!!
Posted on: Wed, 30 Jul 2014 01:22:27 +0000
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