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My son Jeremy finally came home on Thursday, 
6 mos and 15 days after I told him we would probably be just 2 or 3 hours to find out why he started running a fever. Ends up his fever was from a blood stream infection probably caused by a sinus infectionwhich we did not even know existed. The bacteria latched on to his leads for his icd so he was tansfered from on hospital to another to have his icd removed which created major rythum issues and spread even more bacteria through his body. He was then transfered to a third hospital to make use of thier pediatric icu where he spent 28 days in icu and then 5 1/2 mos on the peds unit. Since there is still a lesion of some type on his tricuspid valve the decision was made to place an icd in using epicardial patches instead of endocardial leads. The original plan was for a one hour surgery using 2 patches and 2 leads. The end result was 4 patches with 7 leads and 4 1/2 hours of open chest surgery. The changes were made during surgery which some what concerned me. Post surgery Jeremy had quit a but of internal bleeding which caused major bruising from his ribs down to his hips and then his kidneys started failing which caused massive swelling and adding on about 10 pounds of water. This had happened earlier in this adventure also and may have been related to a reaction to antibiotics. A week after surgery they had to drain fluid off his chest and got 700 cc. Then he started running fevers and they finally pulled his central line and the fevers quit. Finally 2 1/2 weekds after surgery he came home. They will still be doing weekly echos to follow the problem with the tricuspid valve and he is on several more weeks of iv antibiotics at home and needless to say we are still believing God for a healing from HCM as there is no other cure. We ended up with a very good Pediatric cardiologist who is familiar with HOCM and is willinmg to consult with specialist. Lisa I want to thank you for all your help and listening and work with trying to bring about the vest solution. The vest was actually nixed here at the hospital level by the medical ethics board. We were against the surgery as we did not feel Jeremy would handle the surgery very well and felt that God did not want us to do it at that time. After the hospital suggested medical neglect if we did not do the surgery we felt boxed in. 
Apparently we were right but we got though it anyway. We would have prefered to use the vest and decide on the type of defib after he had really gained back his health. Anyway we are now home and the stress and conflicts of an extended hospital stay are now behind us. After what I have seen of 6 months in the hospital I am investigating going to nursing school myself. I will talk to everyone later. Once again thanks.
By the way, we could have avoided this if I had decided to have a vasectomy like my then girlfriends mother wanted when I was first diagnosed, but I wouldn't trade my son and family for anything. I do not regret my decisiuon one iota.
Thanks
Art Geddes
6 mos and 15 days after I told him we would probably be just 2 or 3 hours to find out why he started running a fever. Ends up his fever was from a blood stream infection probably caused by a sinus infectionwhich we did not even know existed. The bacteria latched on to his leads for his icd so he was tansfered from on hospital to another to have his icd removed which created major rythum issues and spread even more bacteria through his body. He was then transfered to a third hospital to make use of thier pediatric icu where he spent 28 days in icu and then 5 1/2 mos on the peds unit. Since there is still a lesion of some type on his tricuspid valve the decision was made to place an icd in using epicardial patches instead of endocardial leads. The original plan was for a one hour surgery using 2 patches and 2 leads. The end result was 4 patches with 7 leads and 4 1/2 hours of open chest surgery. The changes were made during surgery which some what concerned me. Post surgery Jeremy had quit a but of internal bleeding which caused major bruising from his ribs down to his hips and then his kidneys started failing which caused massive swelling and adding on about 10 pounds of water. This had happened earlier in this adventure also and may have been related to a reaction to antibiotics. A week after surgery they had to drain fluid off his chest and got 700 cc. Then he started running fevers and they finally pulled his central line and the fevers quit. Finally 2 1/2 weekds after surgery he came home. They will still be doing weekly echos to follow the problem with the tricuspid valve and he is on several more weeks of iv antibiotics at home and needless to say we are still believing God for a healing from HCM as there is no other cure. We ended up with a very good Pediatric cardiologist who is familiar with HOCM and is willinmg to consult with specialist. Lisa I want to thank you for all your help and listening and work with trying to bring about the vest solution. The vest was actually nixed here at the hospital level by the medical ethics board. We were against the surgery as we did not feel Jeremy would handle the surgery very well and felt that God did not want us to do it at that time. After the hospital suggested medical neglect if we did not do the surgery we felt boxed in. Apparently we were right but we got though it anyway. We would have prefered to use the vest and decide on the type of defib after he had really gained back his health. Anyway we are now home and the stress and conflicts of an extended hospital stay are now behind us. After what I have seen of 6 months in the hospital I am investigating going to nursing school myself. I will talk to everyone later. Once again thanks.By the way, we could have avoided this if I had decided to have a vasectomy like my then girlfriends mother wanted when I was first diagnosed, but I wouldn't trade my son and family for anything. I do not regret my decisiuon one iota.
Thanks
Art Geddes
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