Tuesday, March 15, 2011

Taking the bad with the good

Most days I am not really sure where the last three years went.  It just doesn't seem possible that it has been three years since I stood in the NICU, being told that Sam was gravely ill and that if we hadn't have gotten him there when we did he probably wouldn't have survived the next few hours.

It is impossible to believe the days that went by as we watched Sam struggle to survive.  It would still be many weeks before we would have any answers.

The past three years have, without a doubt, been the worst three years of my life.  They have also been the best three years of my life.  With all of the heartache that Sam's has brought to our family, he has also brought great joy.  I go to sleep every night knowing that every struggle that we have gone through in the last three years has been worth the mornings that I walk into Sam's room and he looks at me with a big smile and says "morning!".

Sam had a great party to celebrate his third birthday.  It was great to see everyone that could make it to celebrate his big day.  Turning three for Sam also meant that he transitioned from the Birth to 3 program to the school districts Early Learning program.  Sam will be attending school three days a week int he afternoons.  Last week Thursday he got to spend his first day at school and we are told he did well.  Today was to be his first day riding the bus to school, unfortunately Sam had other plans.

Sam woke up this morning with a 102° F fever. Because of Sam's central line, any fever needs to be treated as a potential line infection. We have been inpatient in Appleton since this morning and today has been one hell of an adventure.

Sam didn't show any signs of anything being wrong, which is typical of Sam even when he is very sick.  The type of antibiotic that we need to use for Sam until we get results from his cultures can have a side effect called Red Man's Syndrome.  Sam has been on this antibiotic many times in his live and has never had a reaction. Until today.

Sam has had a pretty miserable day since we got about 1/2 hour into his first dose of Vancomycin.  We can help lessen the side effects by giving him Benadryl and by slowing down the rate of his infusion, but neither of those things have helped very much.  The third dose starts in a few hours and I am hoping we avoid another reaction because the episodes are downright miserable.

I will update more tomorrow once we get some test results back, for tonight I am hoping for a mostly restful night of sleep on my ultra comfortable hospital cot. (Who in the hell designs these things?)