Friday, November 11, 2005

Trust and Finding Help

We got through the week fine. Everyone seems to be in good health even though everywhere we seem to go people are sneezing and coughing around us.

A few issues that are still heavy on my mind are:

Trusting the doctors at Stanford. How does it feel to put your son's life into the hands of the doctors? I am afraid of relinquishing all my authority and loosing control over my son's health care. I know, from my lack of knowledge, that I will have no say in what happens to David once he is admitted. OK, I guess they will let me decide if he eats green jello or pizza - really unhealthy food choices for a child with virtually no immune system. This world is absolutely crazy and mixed up!!!! Personally, I would feel more secure in giving David's life to Dr. Filopivich in Cincinnati, OH who has performed 100's of WAS BMTs.

How to homeschool my girls. We are just not sure how to homeschool the girls and care for them for 3-6 months while I am with David. I have to be with David 24 hours a day. The nurses at Stanford do not babysit. We thought about a day-time nanny but could not expect the nanny to homeschool. We thought about doing the BMT over the summer 2006 (starting in June) so at least the girls would not get too far behind. We would certainly miss the Feast of Tabernacles if we start the BMT process in June 2006. If we start in March 2006, there would be a good chance of going to the Feast. Also, flu season is usually over by March. Starting in March and going 6 months would bring us to the end of summer. I also need a 24-hour backup person to sit in with David if I get sick or need a break. We can only have 2 extra backups besides Michael and I. It is crucial to keep the amount of exposure to a minimum to prevent the spread of germs. David's immune system will be wiped out and replaced with another but it takes a lot of time before the new immune system is fully functioning. My mom said she could take the girls and homeschool them but she lives so far away, creating a burden for Michael to drive long hours to see his daughters.

This whole process sounds so disruptive to our family life. I'm not sure how I will be able to handle the loneliness of being away from my family for 3-6 months. It feels like I will be going to a jail. I wish there was a prettier picture to paint.

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