Recovery: Day 5

Why is it we can't invent a better heart rate monitor and sensors?  I'll tell you why.  Everyone is so germaphobic we can't re-use anything.  Everything has to be disposable.  Including the sensors that measure the blood saturation and heartrate.  This means throughout the night the heartrate machine goes into alarm telling us our son's heartrate is 250 beats per minute.  But I look at Cannon and he's asleep.  Hard to sleep at 250 bpm.  But I hate to admit how many times I checked his pulse to be sure the machine was lying... again.

A machine that false-alarms gets ignored, but still keeps you awake.  So a point to ponder: if hospitals are a place of healing, and a prerequisite for healing is rest, how are we supposed to heal if we never sleep?!  Just asking.  That's not the end of it.  You also have your vitals checked every four hours... blood pressure and temperature.  You mix that with a machine they can't fix (we tried new sensors and machines) and you're doing good to get a few hours a night, and none of it continuous.  There's gotta be a better way.  If I was a nurse I'd keep the parents sleeping and happy all night so I didn't have to deal with an exhausted parent hunting me down when my kid is in more pain than he can stand, and the parent is at the end of their rope watching their kid suffer.  But that's just me.

The day started early and never let up.  I'm amazed that we're so busy when we're in a hospital trying to recover.  I've never done this before, but I pictured Cannon laying in bed most of the time and folks quietly sitting around talking, mostly bored, and staff tending to him periodically until he could tolerate standing and we'd go home.  Missed that one.  All the usual littany of folks came in through the morning: attending physician, nurse practitioner for the head surgeon, physician's assistant for the head surgeon, ward nurse, vitals checker person (same one as 4 hours ago), cardiologist on call, room cleaning lady, kitchen staff taking orders, the fun cart with kids goodies, various members of the surgical team pop in to see how their "favorite case" is doing.  Somehow we fit breakfast in the middle of all that, then we met with our physical therapist again.  Instead of the 150' we did yesterday, they wanted 500' right now, so we took a 500' lap around the floor.  I can't tell you how awesome it is to see him walking.  There's just not words.  It's just frustrating that the people that made this possible are the same ones that keep us up at night.  How do you stay mad?

After the Cardio 500 (the lap around the floor is 500'..... get it?) we got picked up for a wheelchair ride to X-ray on 1st Floor.  Uneventful and everything looked great.  Soon after our return we got picked up again for a ride to get an echocardiogram.  They use something that looks like high-powered ultrasound to look at the heart.  Even I can make out the major features of the heart and enjoyed watching those ventricles and valves do their stuff.  Got to see the new big conduit that's feeding the pulmonary artery.  It was installed into his left ventricle (or right depending on your analysis... they're swapped).  This was the gizmo that held up our June 20 surgery at the last minute because another baby was critical and might need the same size.  The one that was installed on Cannon's heart was the same one that they DIDN'T have on the 20th.  Thank you, God, for closing that door!  At any rate, we still haven't heard back on the results of the echo.

When we did our lap this morning, the physical therapist tasked us with 5 more laps around the floor by the end of the day.  That's a half mile give or take a few feet.  So not only are we a few days outside of surgery, we're doing a marathon.... well, 1/46th of one.  I'm not complaining, I think it's awesome!  The only problem was, after a lap Cannon was in severe pain and he'd had to stop a few times along the way.  During X-ray this morning Cannon had started complaining of an "itch" all over.  But he couldn't scratch it, and he couldn't tell us where it was.  He would reach for his neck, then his stomach, but he wouldn't scratch.  We tried scratching and didn't help at all.  It would come and go, and it was getting worse through the echo.  Then progressively worse through the lap around the floor.  Now it was at a crescendo and Tori and I weren't willing to tolerate any more of it.  Cuz it didn't look like Cannon could tolerate it.  He'd be sitting still and relatively calm, then suddenly jump and start crying real hard (like he'd been bit by something).  We're exhausted, we're stressed, we start jumping to conclusions.  It must be this, it must be that, NO IT'S GOTTA BE THE OTHER.  We went from bad stitchwork where the tubes came out of his belly to an alergic reaction to the colace he'd just been given for the first time.  We try to describe it to the nurses and the doctors, we get nowhere.  So what was it?

It was pain.  Cannon had had a painkiller at midnight, woke up in a great mood and in no pain.  Through most of the day he said he had no pain.  But he did have ITCHING.  We were so focused on fixing itching, we didn't think to concentrate on fixing PAIN.  Silly daddy, itching is pain!  We gave Cannon a painkiller at 3 and by 3:15 he was smiling again.  He should have had it that morning.  Cannon, I apologize for your pain today.  It's on me.  Worse than that, our nurse last night had told us to get the pain meds going, and keep them going.  But we were also advised by another party that the pain meds slow a person down and keep them from being able to meet the goals of recovery.  However, this latter advice referred to morphine.  In my haze I'd gotten confused about which med was which and made a poor decision.  This'll be nothing a month from now, but it was a big deal today.  It's 10:15, and I'm looking at Cannon as he periodically twitches in his sleep from pain.  But this time, pain meds are on the way.  I have to admit, I have a thing against using painkillers when they aren't absolutely necessary.  The problem is there's no point in this.  If pain is imminent, use the painkillers.  Once his body recovers, there'll be no pain and no need for the painkillers.  Use them until then.

Tonight, we gave Mike (Tori's dad) a break from Colton-duty and left him with Cannon and Tori to enjoy some time with him.  I took Colton with my parents and we got some Chinese food.  Came back and had some time to sit around with Cannon and enjoy simple time.  Cannon was falling asleep by 9:something, but the meds came at 10:30.  A LOT of them.  The painkiller was one, along with steroids, stomach stuff, stool softener, antibiotic.  I'm proud to say there's nothing serious in any of that.  No big "gotta have it for the rest of my life because of my heart" medicine.  All of that stuff he's now getting should go away, and we should only be left with an aspirin a day in the long run.  But the hard part about the meds is Cannon HATES to take them.  Many are oral, and he has no tolerance for yucky medicine.  I've been able to mix up a Sprite concoction for the painkiller, the rest of them we force down with a lot of fighting, screaming, and squirming.  Sometimes he gets so upset he throws up the meds, but we're getting better.  We bribe with Sprite to wash them down, but he's too tired to reason through it.  He can't see that taking the yucky medicine will make him feel better.

So at the end of the day, we're walking, we have pain that can be managed without narcotics, wounds are healing, we get no sleep, and meds are a pain to take.  Oh yeah, I heard something about some rain today.  I wish I could have seen it, we've been needing it!