Sunday, February 12, 2012

The Long & Winding Road... to Recovery

I sit writing this by Grace's bedside, listening to the continual rhythmic beeping of her monitors. For the first time, post-operatively, I'm filled with peace.

Grace's surgery was a success! Dr. Hanley is truly an AMAZING man- he is humble, humorous, honest and just amazing. Grace's surgery started at about 7:30am Thursday morning, with her first dose of Versed. She left our sight laughing, smiling, and sticking her tongue out- that is the BEST way to say a goodbye to a kiddo going off to the surgical unit. I actually laughed, not cried! Well, okay... I cried when she left my sight, but I was super strong mama kissing her farewell. ;)

Dissection lasted a LONG time. Dr. Hanley met with us around 10 am, and he hadn't even headed into the OR suite at that point, letting the anesthesia team do their thing, and the fellows do the dissecting. Dr. Hanley estimated at that point, before going in, that he wouldn't be able to restore flow to the upper left lobe, but would reconstruct the upper right PA's leading to the upper right lobe, he'd attempt a 20mm conduit, and that the whole surgical portion would last until about 2 pm.

Being antsy, my hubby suggested we take a walk in the fresh air and sunshine- I was hesitant, but I'm super glad I listened and went along. Stanford University is BEAUTIFUL! We went to the Hoover Tower and took in the beauty and silence- amazing! After, we walked to the Memorial Church. We were lucky enough to hear the organ play (I hear this is a VERY unusual occurence, and only happens during church services). The organ boomed out a jubiliant tune, and literally seconds later, we got a call that she was doing amazing, and things were going better than expected. I truly felt peace- what a spiritual moment!

Dr. Hanley met with us around 4pm- he was able to get a 22mm conduit in place, and restore flow to BOTH sides (remarkable!!). Dr. Hanley sees no reason why this size conduit shouldn't last a good 10 years, and now she'd be a candidate for the Melody Valve procedure if/when the valve becomes faulty. The right side of her heart will slowly reduce in size, now that the pressures are down. There was a fair bit more work on her lungs than expected, so she's been recovering from a re-perfusion injury.

Originally we were told that we'd be out of ICU in about 24-48 hours post-op. Unfortunately, due to Grace's history of sick lungs, added to the complexity of the surgery repair to her PA's, we're far OFF that estimate. Grace will likely be intubated (sedated) throughout this week, then hopefully to a high flow nasal canula. The floor won't take her unless she is on 3 liters of O2 or less- so that could potentially be a few weeks off. It's easy to become overwhelmed under these circumstances- Grace is completely nonresponsive, and we literally are just sitting, watching her breathe for 12 hours/day, only to go to bed, exhausted, at night.

I'm coming to terms with the longer hospital stay, but I'm human, and had my breakdown. Today, I'm filled with more peace- I can see small changes, they're giving me hope and I'm seeing the light at the end of the tunnel, granted a LONG tunnel, but we'll get there. Thankful for the prayers, the blessing of friends, and the gift of family!

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  1. I know we don't know each other, but I'm a fellow heart mom and my baby boy just had his second heart surgery at Stanford a few weeks ago. We actually live in the area and I wanted to let you know that I would love to bring dinner to your family, or do anything else to help your stay more comfortable. Please send me an email if you get a chance so we can connect. wigginton dot heather at gmail dot com I'll pray for that sweet baby girl of yours and hope that recovery goes well.

  2. Praying for a smooth recovery. My Asher was born 4/2010. He has ToF, severe pulmonary atresia, absent pulmonary valve, and MAPCA's. We had his BIG surgery done at LPCH, with Dr.Reddy (originally scheduled with Dr. Hanley, but Ash needed it sooner) in Sept 2010. He had his pulmonary valve and conduit replaced again this last September at Primary Childrens in Utah. Though- after reading your last post- I wonder if we should have gone back to LPCH for follow up. They have amazing Dr's there- just make sure you force them to communicate with you (nurses too). They were terrible at it when I was there! Take time to eat in downtown Palo Alto- I really miss Pluto's. And try the cioppino at California Cafe across the street from the hospital!

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