Born @ 27 weeks
2lbs 7oz

Wednesday, May 22, 2013

Here We Go Again

It's happening.

We have known for months Shaw is having surgery on 5/28 (Tuesday).

I've been talking about it more recently as it seems to come up as people kindly ask, "Have any fun plans this summer?" Or "What are you doing for Labor Day?" "What are your plans once school is out?"

People always ask if I'm scared. I tell them candidly that I am. Since we have been through this before, we know the routine and there is a part of me that is comfortable knowing the waiting room, what they will say to us, how to prepare, etc.

However, today the pre-op calls started. The nurses calling with specific instructions that Shaw can't eat after midnight (which for a kid that would eat the paint off his crib, could possibly be worse than the surgery itself). And then the question that is always looming, "Has Avery ever had any problems with anesthesia?"

Y. E. S. - every time, "Avery, (aka SHAW for those that love him), has problems with anesthesia." Last year Shaw had easy-peasy tubes placed in his ears in the outpatient clinic, located next to the hospital. Michael and I watched in horror as the Aesthetician 'bagged' (literally) our baby through the bowels of the hospital so Shaw could be submitted to the Pediatric Intensive Care Unit and be intubated, since he couldn't wake up or breathe post surgery. (Bagged meaning the doctor was manually squeezing air into Shaw's lungs - similar to CPR - until they could get him hooked up to a ventilator). Recounting this moment is still surreal....  I remember Michael and I walking alongside Shaw's bed as the doctor carried on a normal conversation with us, pausing every few seconds to blow a deliberate breath is Shaw's little body - even to multitask long enough to stop to press elevator buttons and acknowledge those passing by ... It is like a nightmare moment frozen in time.

So today, when the calls started, the reality hit me. I finally let it in. Here we go again... And the anxiety, that I have been shrugging off for months reared its evil head as if to say, "You haven't seen the last of me."

And so it begins... Explaining things to Nash, "Well, your little brother was a very sick baby. Although he make look healthy right now, sometimes he has a hard time breathing and the doctor is going to fix that." But for the first time... what do we say to Shaw?

That's the other hard thing. It is SO HARD when your 'baby' looks so good and is so healthy on the outside. I remember one surgery Shaw had just started pulling up in his crib. He was so, so happy. An hour later... well, see for yourself.

This procedure is elective (also hard to swallow and one our doctor has been recommending for over a year). Thankfully, our Otolaryngologist is world renowned and was called in last year when our original ENT broke up with us saying, "Shaw's case was too complicated". It gives us slight comfort that he also sits on the FDA board and (for what it is worth) was Bush's ENT during his Presidency. He is pretty impressive and very talented. I know we are in good hands.

The nurses must think, "It's that crazy Mom, again." I've called over the last few months just to ask questions. One day I said, "Will you just walk me through the procedure one more time?" (I've known the surgery in and out for a year - but this was just in case I forgot something). I called last month because someone asked me what type of cell was reproducing to cause the scar tissue? I thought to myself, 'OMG - I never thought to ask that! What kind of mother doesn't know the cell type?' So, I called again. It took three nurses and a pathologist to call me back. Still, no one really knows. It turns out this isn't such a common question after all.

In short: once Shaw is sedated. They will place a chemo drug, formally used in breast cancer, to paint the scar tissue from all of his previous intubations in the NICU. The scar tissue that grows (and regrows after several attempts to eliminate it), inhibits Shaw's airway. Because Shaw suffers from 'Narrow Airway Disorder' the slightest inflammation, sends him gasping for air, leading all of us to the ER.

The hope is this surgery will kill the cells that are producing the scar tissue in Shaw's airway and he will never have to undergo another airway surgery again. (This is our prayer). The goal is for Shaw NOT to be intubated, but for him to have just enough anesthesia for outpatient surgery, so he can come home with us that day. This is our prayer. This is our prayer. This is our prayer. (I chant constantly).

So, here are some recent pics of our family, that are so similar to so many of yours. Beach time, play time, picnics, etc. This is us worry-free... until today through next week. But hopefully will be Team Richter again very soon.

Thank you for your prayers, encouragement and support.

My favorite boys on a mountain hike visiting Aunt Chow

Nash with his soccer coach

Happy boys because Papa told them they could get a $1 for every alligator they spot in HHI

Quiet, serene morning, strawberry picking with Momma (with a bucket for a hat)

Very excited to pretend to drink water like Riley

How soon do you think 'the dump' is? (miloseconds)

Date night - Novant Oyster Roast (Blue Dogs still have it)

snuggle buds, when they are killing each other

Nash's heaven - in real firefighter garb

Last year on this beach, we couldn't believe Shaw took his first steps. This year, nothing is slowing them down.


BB said...

I so know that heavy anxiety you are feeling and wish I could do something to ease it... but I know nothing will ease it until the surgery is over and your prayers are answered - Shaw is not intubated and home that same day, recovering well! Ella & I will be thinking of you!

Patrick Chiaroni said...

HI Candace Michael and the little monsters
You know I am an anesthesiologist and let me tell you that the most dangerous moment of that day will be when you drive to the hospital! Anesthesia has become so safe now and it seems you are in such good hands that there is really nothing to worry about.
Love and kisses from the four of us
Patrick and Daniele and JB and Laurina