Monday, September 17, 2007

Evening Update

Today turned out to be a longer than expected day. Before they began to start “testing” Keegan’s heart repair by weaning him off the ECMO machine they decided to do an EKG first. It sounded like it was pretty standard procedure before reducing the capacity of the machine and seeing if Keegan’s heart and lung could handle working harder. When they did the EKG they found something new. During his surgery he had a patch placed over the hole between the two ventricles. The area that is patched is called the ventricular septal wall. During the procedure they noticed a little bit of bleeding coming from that wall. The bleeding could be expected since they had to sew a patch into it. It turns out over the past few days the bleeding of that wall muscle has turned into a hematoma of the muscle. This has caused that muscular wall to swell and fill the empty space of both ventricles. It sounds like once the empty space of the ventricles is filled the swelling will stop. The doctors have informed us that there is really nothing they can do for this and that between the group of surgeons and cardiologists they have never seen anything like this before. Not to worry… Keegan is not in pain and as a matter of fact his demeanor and alert status really hasn’t changed. What does this mean for the long run… It means that we can no longer plan on trying to wean him off the ECMO machine. Keegan can no longer get better on his own and must get a heart transplant in order to have a chance. The ECMO will now serve as a means of supporting Keegan until a suitable heart is found and it can be successfully implanted. Over the past four days we have been discussing the odds of needing a transplant. It was first presented to us on a contingency basis. If Keegan had not have been able to be successfully weaned off the ECMO then the repair would not have been a success. None of us ever really expected that we wouldn’t even get the chance to go that far on testing his heart repair. Knowing that the possible need for this could arise we began to prepare all the paper work to get Keegan on the transplant list. We had planned to file for the list today regardless of today’s test. Keegan is now on the transplant list and as I understand it he is ranked very high because of his condition. Maddie and I are now starting to explore all of the “sub-avenues” of the transplant world to see what kind of aid we might be able to get for someone in Keegan’s condition. Once we start exploring options we will keep everyone appraised on how they might be able to help Keegan out. In the meantime I want to leave you with one comforting note on the transplant. There is new research out there that may significantly widen the donor pool for Keegan. At the Children’s Hospital in Toronto they have been experimenting with great success a new kind of transplant in infants called an ABO transplant. They have found that blood type in babies does not always have to match in order for the child to except and support the organ. In adults it must but they have found that children can be more excepting of different blood types. This could make a potential donor with a different blood type a candidate for Keegan. The science is fairly new but we feel it gives us a better chance to see results faster and find a heart that could be the right match for Keegan. Maddie and I understand what finding a donor will mean for some other family but we feel that under Keegan’s present condition would still mean that he could still have a very good quality of life. The longer we wait for a heart the more complications that could arise from being on the ECMO support machine. Please pray that we find a new heart donor for Keegan. Thanks you for all your support.

Gray Harrison