It's been 4 years since Simon's last surgery.
It sounds like some sort of confession when I write it like that. It's odd- there's a way I feel guilty for not keeping up more with this blog and then I remember that the reason why it's quiet is because we're just...living. We aren't having big ups and downs or urgent issues that need frequent updates. I'm *so* grateful for this time. I say "this time" because feels like it's what's between two parenthesis in this journey, not a final destination. I hope I'm wrong. I hope that puberty will not bring the lack of cardiac stability that we fear, and I hope something new won't crop up, but there's no way to tell, so I will enjoy where we are RIGHT NOW.
We just successfully completed what we all hope is Simon's last anticipated surgery. We've known since he was a toddler that it was likely he'd need this relatively minor procedure but didn't know for sure until this past year. Ironically, it has NOTHING to do with his heart. He's just lucky like that.
Unlike in years past, neither Laura nor I posted anything on Facebook about it in advance or rallied any big support. In fact, a new friend organized a meal train and we both put the kibosh on it because we're just feeling...hermetic? Unfazed? Numb?
Laura found herself feeling really spacey the last few weeks and I, honestly, kept forgetting what day he was having surgery, or some days, even that he was having it at all. I pushed away the fingers of PTSD that wanted to creep up my neck and make me worry. I didn't fret, I didn't imagine worst case scenarios (well, not more than once each), didn't feel the woozy slightly drunk feeling I often feel when I'm walking down the halls when we're at CHO for a non-social visit.
Simon was a total rock star. He chatted and charmed and flirted. He bequeathed his precious Harry Potter wand to the Child Life Specialist who solemnly swore to use it with care on their "mission" (what we called his surgery). He brought his favorite bamboo stick and demonstrated incredible strength and skill to the universe with martial arts moves in the atrium while Laura was checking in. When it was finally time to move from pre-op to the surgical suite, he led us all down the hall with a steady pace, blue gown flapping behind him, stick held high and proud. In the surgery receiving area, we literally had to hold him back because he was so eager to meet all the doctors and nurses and embark on the mission. When it was finally time for him to go in, we hugged and kissed him and waved him off as he headed in to the OR with two nurses and the child life specialist.
Paula, the nurse doing the final check in asked us one more time before they started, "So, no solid food since 8:30 am and then just clear liquids until 9:45 this morning, right?" I answered, "Yep, just ginger ale and chicken broth and kombucha". She hesitated. I froze. "Chicken broth. Um...." Turns out there are varying definitions of "clear liquids" and Houston, we had a problem because we fed him broth from leftover Matzo Ball soup.
This phenomenal nurse did exactly what she was supposed to do and went to go check in with the anesthesiologist. Two minutes later the entire team was back with us, minus the child life specialist and Simon, plus the anesthesiologist. Long story short, liquids with fat and protein can be a HUGE issue b/c they digest more slowly than just juice or soda, and if there are particulates, they can cause pneumonia if aspirated. Laura did the math again in her head and we described in more detail what he had ingested. The surgeon said, "I think we might need to reschedule".
My blood ran cold.
The surgery we've been dreading for 7 years and finally sacrificed part of spring break for and that our son was actually PUMPED for was about to be cancelled because of a goddamn box of goddamn Manischweitz soup. But... this is why I love Children's Hospital Oakland. The anesthesiologist stepped out to consult with a more experienced colleague to see if we could get some clarity on how big a deal this really was. He came back and said that it's a really gray area. I asked the surgeon what she would do if it were her child (her classic surgeon response was "I wouldn't have given it to him"!) . They were clear to explain that there was a risk, but that it was very unlikely that anything could happen. I could tell we were all on the fence, but that the surgeon wanted to make sure that we understood the risks and that basically it would be our decision to move forward or not. Blessedly, as with every other major decision Laura and I have had to make, we were on the same team.
We went down to the cafeteria where we estimate that we've logged at least 250 hours over the years (including waiting during his 4 other surgical procedures). When it got close to time, we were too antsy to wait for a call so we went to the surgical waiting room to kick back in recliners and watch Jeopardy. Just when it was starting to be uncomfortably late, a nurse walked in and asked for Simon's parents. We both struggled to sit up in our recliners and grabbed our stuff. "Hold on, hold on", she cautioned and, again, my blood ran cold. Laura and I looked at each other.
"Is he awake?", I asked urgently. She broke into a smile and said, "Oh, yeah, he's doing great. He woke up in a great mood and when I asked him if he wanted his Mommies, he said no and rolled back over to go to sleep". We busted out laughing. One of our biggest fears was that he'd have Emergence Delirium as he has had every other time he's come out of general anesthesia. The best way to explain Emergence Delirium is that it's like trying to manage a furious, feral animal with a fresh surgical wound who wants to kill you. It's hideous. We opted out of Versed before surgery as it's likely to contribute to Emergence Delirium and we literally high fived at the news that our plan worked.
When we went in to see him eventually he was very sleepy but quite generous with his thumbs up regarding his status. A few vital readings and one purple Otter Pop later we got discharged. He's currently passed out in his bed.
I'm so grateful that this procedure is over. It's been hanging over our heads for years and I can't be happy enough that it's over, that it went well and that I got to witness how incredible our kid is. He's integrating his trauma in the most incredible ways. Who eagerly runs into an OR?!
Team Shimmy, over and out.