Yesterday was our meeting at Childrens Mercy with the Surgeons and Doctors to find out what happened to Blake on Sunday 6/15, which subsequently was the day his life ended. We went into the room at CMH and I plopped pictures of Blake in the center of the table so they could see his face as we were talking. They were all very sad, hugged us and proceeded to explain the findings. First off... everything about Blake was progressing as that of a healthy 10 month old baby. His Heart, his brain, all of his organs, his muscles.. everything....perfectly healthy and thriving. But when you have surgery on your bowels you have to be careful for up to 10 years after surgery and watch for signs of infection. As soon as he showed signs, we took him to Childrens. An infection is caused by bacteria, and in order to decipher what type of bacteria is causing the infection, a culture is taken and they have to "grow" the bacteria in a lab to identify it. This can take one to two days in a lab. The doctors were shocked to find that the type of bacteria Blake had was basically unheard of... there are only 4 documented cases in medical journals of this type of bacteria , which all led to death. This bacteria is very deadly..we all harbor it in our bowels, but when it decides to play for the other team, it will attack your organs, very rapidly and cause organ failure, which in the end it entered his blood stream, attacked his heart and he died. Unfortunately they could not tell us the type of bacteria he had that morning, because of the length of time it takes to grow...had they known it was of this type, the only thing that may have been different would have been them being able to tell us he would most likely die. The same course of action to treat him would have been taken to fight it..., Antibiotics, IV fluids and pain medication. They do not deny that all factors played a part in how quickly he died...how dehydrated he was even with IV fluids, medication for pain and sometimes even antibiotics can fuel a bacterial infection, the infection was way too strong and he was just too weak to fight......There is only one way though to treat infection, and that is with all of the above treatments. In the other cases the babies lived sometimes up to 6 weeks fighting this off, but in the end, the results were the same, multiorgan failure and death. The doctors said they had a huge meeting and talked about this very rare bacteria, and the fact that CMH itself has never seen a case like this... they are all as shocked and heartbroken as us. We know they loved him and really tried very hard to save him. Dave and I are at peace knowing he did not suffer and later when Chase is old enough, we will explain it to him. At 1045p when his systems started to fail they worked for 30 minutes trying to save little Toots and we are at peace knowing that during the 27th minute of trying to revive his little body that they did not..he would have likely been on life support, maybe for the rest of his life and we believe he had enough challenges to face, Blake deserved the best possible Quality of life... we don't believe quality is defined by quantity. The doctors told us what they learned from him and how he affected them... they loved him, and we know he was in the best possible care at CMH. Anyone that knows me, knows I am a question asker and I asked many questions...the doctors also said to please know this is not it for them, if we want to meet 10 more times and ask questions we can. Today we are choosing to heal over question... and we hope this brings you all a little peace as well. He definitely made medical history being only the 4th documented case and we are certain they will learn from him, as we all have as well. We know he did not suffer, and we know every minute of his 9 months and 22 days were happy, and the biggest blessing of our life.
We hope you can feel some peace just knowing you are sleeping among an Angel every night... we are finding a little more peace each day, and you are all a great contributor to that.
We love you all and please know you can ask me anything if you have questions...
Love and so so many Thanks to you all-
Kelly, Dave and Chase Greeninger
