Saturday, June 8, 2013


Simon went under general anesthsia today for the first time since he was a critically ill baby in the ICU.  The idea of him going under general scared the bejeezus out of Laura and I even though he's really medically stable.  Yes, his heart function has been in the normal range for a long time, but HELLO!  He almost needed a heart transplant 4 years ago.  Crazy shit happens.  Especially to us. was a totally minor surgery (endoscopy for his feeding therapy program and ear tubes) but obviously not that minor for us.

The feeding therapy program requires an endoscopy because so many kids that have gone through their program ended up having some sort of asymptomatic, undiagnosed gastrointestinal issue that interfered with their ability to be successful in the program.  He had to be put under for the scope and once we found out he had to go under general for that, we decided to have tubes put in his ears while he was out since we'd been discussing them for months but hadn't wanted to put him under just for that. 

Laura did all the pre-op appointments and conversations so I didn't have any of the details about how his anesthesia would be administered.  When she told me last week that he'd be having gas I started to feel a little panicky.  The most traumatic experience of my life was going under for a tonsillectomy at age 5 (um, yeah, the same age Simon is now)  My surgery was at a non-pediatric hospital and they didn't have anything like child life specialists to help prepare kids.  When they put the mask on me (without my parents present,of course, because it was 1981), I was not prepared for it to be hard to breathe or to smell the gas.  I thought I was being suffocated to death and that no one knew that something was wrong. I understandably put up a huge fight and my last memory was being held down by a bunch of adults while I thought I was dying.  I have had lifelong issues with anxiety as a result (which I didn't link to this experience until a few years ago when I read "Waking the Tiger"- an amazing book if you haven't read it!). 

I was feeling pretty nervous for Simon's procedure partly because of his heart condition but mostly because I didn't want him to experience the same kind of trauma I did.  I think I can safely say his experience was nothing like mine, thanks to the incredible team at Children's Hospital Oakland and our support system.

Laura's Dad (he's in town visiting) and Simon's godmommies Joan and Andreana met us at the hospital at 8 am. Joan and Andreana brough donuts to celebrate National Donut Day- we ate ourselves sick on those while Simon was having his procedure.  We walk back to bed 8 and who is standing there but the very first nurse who ever took care of Simon in the ICU, Margaret!  Margaret blew me away because on her very first shift with us, she learned which one of us was Mommy and which one was Mama and got it right even when we couldn't remember.  We LOVE us some Margaret.  Oh, and she's a fantastic nurse and saved his ass a few times in the ICU.  It felt like a good omen.  

Simon was charming as ever:

Sassypants getting weighed
Margaret trying to check his heart.  "Do I listen here, on your hand?"
"There it is!"
Then, who comes walking in but Geralyn, another one of our favorite nurses!  She knew we were coming via our posts on Facebook and was having a slow morning so she came to visit:

A Child Life specialist came by (Laura and Simon had met with them before to get used to all the equipment including the anesthesia mask and to see what ear tubes look like).  They gave him a medical kit to play with before his surgery:
Giving PopPop a check up before surgery
Simon was given Versed (a  sedative) through his G-tube and we all had to work REALLY hard not to laugh in his face as he started acting like a drunken sailor. "I'm S-e-c-r-e-t-a-r-i-a-t" he slurred.  "I'm awaaake" he informed us.  Uh huh.  Okay, Bub.  Whatever you say.

The anesthesiologist came by and started asking a few basic questions.  It was immediately apparent that he had not gotten the 411 on Simon.  Laura and I looked at each other.  "Simon has dilated cardiomyopathy", Laura said.  I wish you could have seen his face.  "This is considerably more complicated than I anticipated" he said and hurried off to get caught up on Simon's chart.  Fortunately, our fave nurse, Geralyn, had already done the happy dance when she saw that he was our anesthesiologist, so we decided not to freak out.  He came back a few minutes later, much relieved at Simon's latest echo results.

All of a sudden, it was time to go.  Laura and I quickly had to decide who was going to carry him in.  Laura graciously let me and we suddenly entered the bright, sterile, cold OR.  I felt a little shiver of fear but took a deep breath and tried to keep my focus on Simon.  I laid him on the bed and all of a sudden, the mask was there.  I got my face right next to his and just kept talking and stroking his head.  Laura was right next to me, further down his body and had her hands on him so he'd know she was there.

The team had warned us just before we went in that kids sometimes fight the mask and panic a little.  I tried to banish the images from my own experience and just stay super, super, super calm and reassuring.  He struggled a little but mostly just looked surprised.  In a stroke of genius, I remembered how much work we had done to get him used to using a mask and spacer when he's needed to take an inhaler, or "special breathing" as we call it, when he's had bad colds.  "It's just like special breathing, Baby", I kept repeating and  counted like we do when he has to do 10 breaths.  Laura and I kept saying reassuring things until his eyes closed and the doctor and nurse said they thought he was out.  It was totally unnerving though, because his body was still arched, his hand tightly gripping the nurses hand and Laura said he was still kicking his leg a little.  The doctor said we could have a little cheek and we both smooched him on the cheek next to the mask and headed out.  

I felt better than I anticipated but still sort of cold and shocked and jittery.  Laura looked a little traumatized too.  We didn't really have time to process before we all went down to get coffee and eat donuts.  I joked later that we needed a "yichud" like we had at our wedding (a few minutes alone together at the conclusion of the wedding ceremony).  Laura and I were anxious to get back up so we scarfed our goodies and went back up to wait.  

The two staff members from the Child Life team passed us on their way down the hall. They said incredibly sweet things to us that I can't exactly remember, but something to the effect of "that went incredibly well when he had a little struggle and it could have gone really differently with another family" and "it's amazing to see a family have so much support. It really makes a difference".  It was gratifying to get feedback that we did a good job and I was SO glad Bernie and Joan and Andreana were there to hear someone affirm how much they matter to this process.  Goooo Team Shimmy!

About ten minutes later his gastroenterologist came by with shiny pretty pictures of his gut (nothing obviously going on but they'll do pathology on the biopsies to turn over every stone) and then it was time to go in to the recovery room.  He was as pissed off  coming out of anesthesia as he was as a baby.  He cried furiously and tried to take the splint of his arm with the IV and swatted at us constantly, knocking off Laura's glasses at one point.  We just let him cry and be mad, while trying to avoid getting a black eye.  

I kept saying, "I'd be really mad too!  Go ahead and cry, babe. This totally sucks."  I really think a lot of what causes emotional trauma is not as much the actual incident but feelings about the incident and not being able to express them or make sense of them.  My goal was to let him be as mad and sad as he needed to be, even if it disturbed everyone else.  After about 45 minutes, we were sent home.
Our entourage

Simon cried all the way home and then, as soon as we pulled in the driveway, he stopped crying.  He watched videos, had a snack,  took a nap and then BAM, he was back to being Simon.  It was crazy to watch how fast he bounced back.  I'm expecting some waves over the next few days and weeks as he processes it but so far, so good. 

It's been a tremendous gift to see how things can go for a kid when everything is done right.  I am so grateful to Children's Hospital Oakland for helping Simon have a successful, positive experience and for helping me heal old wounds. 

Blessings, blessings, blessings abound. 


Sarah Ochoa said...

ooooh, girl. Got a little choked there when you described helping him with the gas. Love the sassypants on the scale!
Glad Simon came through so well- you guys are amazing and your support is amazing!

Annah Elizabeth said...


So happy for all of you!

Hugs and Healing, Journeyers...

Maxine Dangerous said...

Just saw your Devotion Project video and found my way to your blog. You have a lovely family and I'm happy to start my day by getting to know the three of you, even if only a little. Blessed be! <3 :)