2022.05.26 - 6:30-9:30PM
After a super-lengthy screening that took at least 4 minutes (seems long when you're ready to see your kid), we finally got back to see Cannon. His eyes were closed, but he could open them with effort. I can't describe what a relief it is to see him on the backside of this surgery. Despite the surgeon's warnings that we're not out of the woods, it sure SEEMS like we're out of the woods having had the chance to see him, talk to him, and see him respond.
He's in a LOT of pain. Cannon has always been tough. He gets a lot of that from Mommy, and has gained a lot of it from previous experiences. So we're finding it hard to see him in this much pain, knowing that we've seen him handle serious pain with barely a wince.
He's actually a little hesitant to push the magic drug button to get some pain relief. We keep reminding him, and he's getting into it. But the morphine doesn't seem to help much. We just had them double-check it... he's hit the button 6 times, so it's as good as it gets for now.
While I'm here... my apologies for the delays in posting. During his 2012 surgery, the whole family was in the waiting room and I had a spot staged up that I could sit at to post updates immediately following discussions with the OR nurse/doc. But TCH is still riding the covid lunacy and restricted the waiting room to TWO people per patient, and they are strictly enforcing it. Dad and mom even ran into an unnamed VP of TCH who made three phone calls on our behalf and wasn't able to move any of those mountains. All that said, Tori and I would be at the hotel, walk across the street to meet with the nurse for each of the below updates, then have to walk back to the hotel. Each time, we'd have to wait in the waiting room for the nurse to be ready to meet with us. I love the abilities the entire TCH staff brings to bear for our son's sake. But I'll lose my witness if I start talking about the management of the hospital. They're piling stress on stress on headaches on top of whatever procedure you happen to be here for. They have the leverage, and I'm not happy about it.
All is stable for the time being, we're going to sign off and quietly sit and stare at Cannon and pray that God will ease his pain. We thank you all for your continued prayers!!
Good night and much love,
The Kings
2022.05.26 - 4:30 PM
Nothing major at the 2:30 appointment; Dr. Hickey was making final closures and they were monitoring the bleeding that's common for open heart surgery.
As promised, Dr. Hickey met us at 4:30 and gave us the rundown:
- Everything went as planned. A new conduit is installed, along with a new pulmonary valve (they opted to use a human valve this time).
- A lot of the vessels/tissues were stuck to the chest cavity. As they opened his chest, a lot of damage was done to the vessels; these had to be repaired as they went along. This was done very slowly, and slowed the whole procedure down.
- Since the bottom of the heart is backward (what should be the back of his heart is facing the front of his body), there were a lot of "unexpected" vessels in place that complicated matters.
- To bring him out of anesthesia and get his heart going, they give him "rocket fuel". This makes the heart work as if he's exercising strenuously. It was during this time they took more measurements and discovered some pretty severe pressures past the mitral valve. This hadn't been known previously as there's no way to test this except while they're inside his chest. He'll be on beta-blockers moving forward to manage how vigorously his heart pumps. This may also limit his peak exercise capabilities.
Now we know he's out of surgery and moving to ICU. We're super-excited to get to see him, but have to wait another couple hours for them to set him up in his ICU room (2407). In the meantime, we're going back to the hotel to say goodbye to Carrie and send her back to Ohio.
2022.05.26 - 1:30 PM
CANNON IS ALREADY OFF THE BYPASS MACHINE!! This is the best news to hear, as it means his heart is beating on its own again. It gets easier from here so long as everything stays nominal. Thank you again for your continued prayers! We expect another update at 2:30 and the hope is the update after that will be from Dr. Hickey himself.
Dr. Hickey is the primary heart surgeon. We determined he's smarter than anyone else because he has a British accent.
2022.05.26 - 12:00 PM
Dr. Hickey had to use the groin access for cannulization (where they hook the heart/lung machine to the arteries). This was always a backup option if he didn't like what he saw inside Cannon's chest. He's in the process of stitching in the new conduit and valve. It's somewhere in the order of 120 stitches. I wonder if doctors take seamstress school.
2022.05.26 - 10:00AM
Just got a notice that Cannon is safely on the heart-lung bypass machine. They're still doing prep work to get into the chest cavity, so his heart is still going on its own. Our next update will be around noon.
2022.05.26 - 8:35AM
It's 8:30, and it's been a long day already! We started at 5, got dressed, got some pics, and headed down to to ride the shuttle to the hospital. At check-in, we had 8 folks including Carrie, Dad, Mom, and the 5 of us (Dawson is working in LA). We'd thought they'd allow everyone into the hospital, even though we knew we could only have Tori and I in the surgical waiting room. We were wrong... they would only allow 2 folks into the hospital with Cannon. We got one more pic outside with everyone, then let everyone hug on Cannon one more time before heading up.
By 6:30, Cannon was in his robe and we were going through paperwork, consents, and working on the IV (took a couple jabs). The team was somber, until Tori prayed for God to send someone that would bring some levity to the situation. In walked Dr. Vener and there goes God answering a prayer. He brought much humor through quick-witted one-liners and got Cannon smiling big and relaxed. He quizzed Cannon about how soon Cannon would be challenging Rory McIlroy on the tour, whether Cannon had problems finding shoes for his massive feet, etc... All plans and procedures for the surgery were discussed, we signed Cannon's life away, and kissed him with words of encouragement and affirmations that we'd see him shortly. This was [again] a tough moment. The realization that:
- He could die on the table.
- He's in God's hands.
- God promises to work out all things for good for those who believe in Him.
- OUR visions of "good" are sometimes different that God's plans for "good".
- The path to God's "good" is sometimes painful.
Keeping all these things in mind, and God's plan ahead of all our fears, proves to be a challenge. On top of all that, we have to leave the hospital to hang out with family at the hotel. The frustration with TCH for their lack of compassion, continuation to ride the covid excuse, and overall inability to endure this with simple logistics... it's hard to describe.
We're currently in our hotel room with the family, waiting for updates from the surgical team through the HIPPA-approved app we now have. We'll also get updates through the day, but since we're not staying in the tiny waiting room we'll be riding this out in the hotel room primarily. Meaning we'll be having to hike across the street to get to the hospital for most of the updates (every hour or two). We'll be updating here as we get updates. That said, the only update we've received just confirms that Cannon is currently sleeping and being closely monitored by the anesthesia team. Right now, I expect they're opening his chest and beginning the long process of cutting through the scar tissue from the 2012 surgery.
Thank you to everyone for your prayers and petitions to God for a successful surgery. We'll update soon!
2022.05.25: T-minus 1 day and counting
We spent the morning in pre-op:
- X-ray (they thought I was crazy for wanting a pic here, they didn't realize I had to get a comparison to a pic we took when he was 6)
- Blood draw
- Research team (approving them to use spare tissue for research)
- Social worker
- Child-life worker
- Dr. Hickey's nurse practitioner explaining the events of surgery-day
- Anesthesia team quizzing us on anything that could prove a challenge to them
After pre-op, we had lunch at Miller's Hamburgers in Scurlock Tower (yum!), hung at the hotel to wait for Mom to show up, then went to the PGA store to let Cannon whack some final balls for a few months. I hit a 306-yard drive and Cannon was floored. He'd only been getting to 280. THEN he stepped up and hit a 311-yard drive. Out-drove daddy... dangit. But his smile says it all.
After the PGA store, we went to Pappasitos to get Cannon his last meal before surgery. We all ate too much, I apologize if no one can get any food for a while. We cleaned them out.
Then to the hotel for a while, Dad/Mom/Colton went and picked up Carrie from the airport, then we got to bed about 1 AM.
Daddy smacking a 300+ yd drive at the PGA store:
Cannon showing me up with a 311-yd drive:
The delegation that WASN'T allowed into the hospital to support Cannon:
Cannon getting his Xray during pre-op at 6 years old:
Cannon getting his Xray during pre-op at 16 years old:
Cannon waiting for them to get the IV in: