Friday, September 24, 2010

But wait, there's more!

The Kindergarten saga continues...

We had our regularly scheduled check up in February with our pediatric cardiologist.  He said things were not holding out from FB's first surgery as well as they had expected.  He wanted to get another x-ray and to also talk about FB's case at his heart board meeting in a couple weeks.  We knew that day FB was going to have surgery again, and sooner rather than the later we had planned. 

A week or so went by and we got the call.  "Yes, we do want to go ahead and do another repair on his aortic valve.  We'll set him up with an appointment with Dr. Amazing Surgeon again and go from there.  We're thinking about having it during his Spring Break."  Oh, you mean in just another month and a half?  Again, GREAT!  So we cried and worried and waited. 

At the same time they were still deciding about his IEP at school and for what services he would qualify.  We had our IEP meeting on Thursday before Spring Break and we had a meeting with the surgeon the next day so the school couldn't implement his IEP until after he recovered from surgery and returned to school.

His surgery was originally going to be another repair of his aortic valve.  Then when we met with the surgeon, he told us his plan was to fashion new aortic valve cusps out of his pericardium tissue.  OK. Sounds good.  We trust in your judgment, of course.

Surgery day arrived, after being postponed a week to accommodate the doctor's schedules, and we were again scared to death.  Our prayers were answered again and he made it through the surgery.  We did end up with a mid-surgery change in plans, however.  FB's aortic root was too big to make the aortic cusps out of his pericardium but big enough that they could go ahead and implant a mechanical valve.  This means that FB will need to take blood thinners for the rest of his life and that includes finger sticks to check his levels regularly.  Oh, and he ticks.  As in, you can hear his mechanical valve ticking all the time, which makes hide and go seek terribly difficult.  But other than that, he's the picture of health.  We also hope that he will never need to have surgery again, at least not before he's 70 or so and we're long gone!  Hallelujah! 

He went back to school about 3 weeks before school was out for the summer.  We survived those few short weeks without any issues and were glad to start our summer off on the right foot.

Long story short, FB has had so much shit to put up with in his life, it's just ridiculous.  I suppose other people have worse things and I shouldn't complain because in the end, he's fine now, heart-wise.   First grade has been pretty calm so far.  He's had a few incidents this year, the headlock for example, which won him a recess-free day on the following school day.  Fortunately, they haven't sent him home yet this year, which is awesome.  But we are surviving. One Day at a Time.  And of course, if you call my phone or leave me a voice mail during school hours, I'm liable to answer with an exasperated tone because you have just given me heart palpitations.  Don't you know it kills me when my phone rings? Don't call me unless it's an emergency, or in fact aforementioned headlock has once again occurred...

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