2022.05.27 - Post Op D1

6:30 PM

Since the last update, the Occupational Therapists came in to begin teaching Cannon how to function considering his recovery from surgery.  Given it was open-heart, he can't lift, push, or pull, nor can he raise his arms over his head.  It's also going to be a struggle for him to use his core for a while, so simple tasks like getting up from horizontal, or standing/sitting will have to be learned in a new way for the next 6 weeks.  After spending an hour reorganizing his various tubes/IVs, they were finally able to maneuver him so he could sit up.  He tolerated this well, so they got him to stand (having learned the correct procedure), and then sat him in a special "cardiac" chair.

They let him stay there a couple hours, then Physical Therapy came in to get him up and walking.  He had to have a walker to hold his oxygen and vitals monitor, and he used that to walk about 200'!  This all within 24 hours of surgery.  He had to endure quite a bit of pain to accomplish this, and we're quite proud he pushed through it.

He's also having to inhale through a restriction contraption that helps to exercise his lungs and get them to refill the chest cavity.  He understands his ability to do this excruciating task repeatedly is what will get him out of the hospital sooner.

He asked to remove the oxygen cannulas that he's had on.  The nurses approved, but his saturation dropped down below 90%.  After a few hours of no improvement, the oxygen had to go back on.  The expectation is that once we get the chest tubes out, he'll be able to take full and normal breaths and that'll restore his saturation.  That said, all he wants now is to get the chest tubes out.  This won't happen until fluid stops draining out of the chest cavity.

The only other significant news is that he's off the morphine IV and is now on oxycodone orally.  He's also down from about 12 IV meds to 3.  It's great to watch them remove "stuff" from his body and system!  The farther we get without incident, the more out of the woods we get, the more the stress comes down.

Some pics:

Our first look at Cannon as we came into ICU:

This isn't an 'ICU' room.  They have a new process where we get to stay in the same room and they change the status of the room.  It starts as an ICU room, then downgrades to "Acute Care", then is just a normal hospital room.  So we get to be with him the entire time, and no moving.  It's great!  But not good enough to offset the visitor policy.

After a long night, Cannon has a busy day.  Gotta start with some chow.  We were surprised the docs lifted dietary restrictions so soon!

Got chow, now it's time to work.  No laying around for you:

After sitting comes standing (without using your arms):

After standing comes walking.  He didn't play the "I just had open-heart surgery" card:

Looking back:

What do you do while your kid's in surgery?  Go to the pool (I'm busy sending updates):

10:30 AM

The worst part of this has been Cannon's pain immediately following surgery.  We'd told him about the morphine pump multiple times, so we expected his pain was beyond the morphine's ability to dull the pain.  After some troubleshooting, we learned that Cannon hadn't been pushing the button at all.  Once he got in the hang of that, he was able to get some rest... about 5-10 minutes at a time.  He'd wake up, hit the button, go back to sleep after a while, repeat.  That said, he was up quite a bit through the night from the pain and from the alarms going off on the vitals monitor.  Mama slept in the chair next to the bed and checked on Cannon all night, I slept on the couch and checked on Mama all night.  To be certain, I got more and better sleep than she did!  A mama bear and her cubs....

Activities started at 6:30 this morning with an X-ray, and it's been quite non-stop up until now.  After the nurses tended to him, a series of doctors have been in to study their portion of Cannon's case, then the entire team came through for "rounds".  Primary talking points:

• Cannon's BP has been just over 100/50.  Because of all the repair work they had to do on the vessels within, they'd prefer the pressures to be about 90/40.  They're addressing with meds for now to allow the stitching of the vessels to permit healing without higher than necessary pressure.
• Saturation has been 100% through the night, but is now down to 97%.
• Heart rate hovers at 74, respiratory rate at mid teens.
• The old conduit was extremely calcified, and the old valve had been destroyed by the cath we did in 2018 as we were trying to increase the diameter of the conduit for his larger body.  The goal this time around is to stay on an aspirin regimen daily to increase the longevity of the new conduit and valve.
• They're still not certain he'll be on beta-blockers to limit his heart rate.  If it prevents enlarging of the heart, I'm all for it.  We need his ticker to last him as long as possible... whole life would be preferable ;-)
• The chest tubes are laying inside his chest cavity behind his lungs.  They are a large part of the cause for the chest pains he experiences when breathing.
• He's being watched over by a surgical nurse, an ICU cardiologist, an adult cardiologist, and a pediatric cardiologist.  Not to mention the charge nurse, his assigned nurse, and that nurse's trainee.  Oh ya, and his parents.

We talked to the charge nurse (Sam) and asked her to do all she could considering the visitation policy.  Mike (Tori's dad) is flying in for this event... are we to exclude him from seeing Cannon?  Or should either of my parents be excluded from seeing him?  Of course not!  While she understands, she's still preaching about rules (besides Mama and I, we're to assign no more than TWO visitors for the duration of Cannon's stay).  When I asked the intent behind the rules, and what drove the rules, the answer was ambiguous.  Of course, they're trying to stay away from using the word covid, but they work into the answer.  The covid excuse in general is becoming less acceptable, and is completely unacceptable for us in this situation.  I refuse to wear my mask in the room, and wait to be told to put it on outside the room.  The staff were amazed when I told them Methodist has removed their mask policy; they didn't know they were way behind the times!  Their visitation policy is way behind the times, and only serves to add stress on top of what we would already have to tolerate.

And as I was wrapping this summary up, we've been informed we can have a third visitor for ONE-TIME for no more than two hours.  Absurd.  My ears are red.