Actually no. It was saturday morning; but the hours and days have blurred to become one. Exhausted to the point of dizziness. Unable to feel having used up all feelings. Wondering what will come next.
25 years ago he had his first bout of brain surgery. The first occurred within hours of his birth. It evacuated a Posterior fossa bleed that was killing him and saved his life.
The second took place right in the NICU when a temporary shunt was placed to relieve pressure on the brain. It failed since his spinal fluid was was thick with blood and coagulated in the shunt.
Twice daily lumbar punctures to relieve the pressure and monitor the fluid went on for weeks.
The third surgery placed a VP shunt. He was 6 weeks old.
This Saturday morning a surgeon at MGH replaced it...from the ventricles to the abdomen.
He's been lucky, actually. 25 years without a failure or infection is an extraordinary run for a shunt.
When I started writing this I was flooded with things to say. I had a few minutes away from the hospital, I sat, I wrote the intro, and woke up an hour later....not sure where to take it.
About the raw emotion?
About the wonderful nurses?
About the ones who were not?
About the whirlwind that was the 8 hours from arrival to surgery?
About the weeks of hospital stays and other illnesses that predates this?
About the disparate payments between what insurance pays local hospitals versus MGH?
About my sons experience with the medical system over the last 25 years?
About the times it's done well by him? The times it has not?
About him and his life?
About the quote we just received for a new power chair?
About the politics of health care?
About the fever?
And as I sit here by his side, I still don't know what to write, but that, My son had brain surgery.
Mon Jul 04, 2011 at 12:14 AM PT: First and foremost; thank-you all for your best wishes.
Im humbled.by the response to our story and truthfully a bit embarrassed by the attention you have graced upon it.
I never imagined this diary (my first) would have such a response and end up on the rec list, although in retrospect perhaps I should have, given the title. I needed to write, to somehow give voice to the last few days experience, which, while exhausting, i have to say have also been positive. We have much to be thankful for.
To everyone who has asked i update with how he is doing; I won't be able to update you all as often as perhaps you'd like but please know he is on a positive arc now.