Love is to be shared and life is to be lived, to be experienced, to be enjoyed. It is something to wrap oneself around and hold onto as tightly as possible with every fiber of one's being while simultaneously being completely and totally wrapped up inside it
Saturday, January 28, 2012
Some very good questions have been asked here are some of the answers.
Yes, at this time the donor heart would be from a baby. If she gets to
be bigger and a donor heart is found then it would be from another
child her size. We have now started the process to put her on the
donor list. There are criteria and tests. They will be looking for
possible reasons her body might reject the new heart.
It takes about 2 weeks for all of the tests and a meeting with the
cardio panel. At that time she will be put on the list if she meets the
criteria. the criteria are: no potential rejection due to viruses she
may carry, no genetic issues, her quality of life is compromised by
having a non functioning heart. She is unable to function outside the
hospital. The current medication she is on would put her on the list
for people needing a heart right away. The surgery is very straight
forward. The medications and restrictions she will be on after the
transplant are not. Right after the surgery she will be on a slue of
medications at high doses to prevent rejection. The medications have
side effects. After a year the rejections rate drops. If she gets a
heart as an infant the rejection rate is less because of the fewer
antibodies in her body. Right now she is on a blood protocol to
prevent unwanted antibodies. This is difficult, to think of someone
lossing a child to help ours. This is what we will do for another
family if Kamryn doesn't make it through all of this. It is hard for me
to think about, and difficult to write. But God is in control and we
are committed to His path. Knowing you are praying for our family gets
me through the day. There are many more days to come. We don't know
when a heart will be available or if she will be able to maintain it
when she gets one. My prayers are with the Drs who make the decisions
and fight for the children here in the CICU. There job is so difficult.
God is in control and we are committed to His path.
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