The Life Monitor

I don't know the technical name for this monitor, but it's the one above every hospital bed in the world.  It has lines and numbers on it.  And depending on those lines and numbers, most anyone can tell if a person is alive, or not so much.

As most people know, when you have a loved one in ICU there's not much to do but look at said loved one and stare at the monitor.  Maybe since we're free Americans and so trained to watch TV, we'll watch any TV... even if it's one where the only TV show looks like a stock ticker and has just as many thrills as watching your 401k graph on a minute-by-minute basis.  In Cannon's case, some of those numbers are of particular interest and we find ourselves staring at them for hours on end.

The pic above is the only TV show we've been watching for the last couple days.  The green 139 is the heart rate.  This morning it's down to just over 100 and the pacemaker has been removed!  The red 69/47 is currently around 90/60 which is about where we want it.  The two white numbers below that are the pressures in the left and right atria, we want those around 8 and we're not there yet.  The yellow 40 is carbon dioxide, and 40's in the middle of the acceptable range. 

The blue 96 is his "pulse ox".  It's the number Tori and I are VERY familiar with, it's the number we've been watching for 6 years to tell us when surgery would be necessary.  It turns out this number never got down into the mid 80s like we thought it would, so we were able to hold off having his surgery until absolutely necessary.  This number represents the amount of oxygen in Cannon's blood.  Most of us run at 100%, a bad case would put it at 95%, but Cannon was always below that at 90% on average.  It fluctuated a lot on him because his blood was oxygenated "by accident".  Until yesterday, his body only got oxygenated blood because a hole in the middle of the heart allowed oxygenated blood from the lungs to "mingle" with unoxygenated blood from the body (in a healthy heart, unoxygenated blood is sent to the lungs, oxygenated, then sent back to the body... there's no mingling of the two).  Now that repairs have been made, we're seeing this number hit and hold 100 for the first time in his life. 

In addition to the numbers on the right side of the screen, we also look at the white number on the bottom left, temperature.  This morning he's great, right at 97 (F)... I'd like to thank whoever wrote the conversion app on my iPhone, so this American can translate the celcius on the monitor to a Fahrenheit number he can relate to.

There's other machines we get to watch, too.  There's one dedicated to monitoring the amount of oxygen in his brain.  He's been well above minimums on that one.  Then there's the breathing machine.  This one is really fun to watch.  It has an active graph that relates pressure and volume of his breathing.  The machine's job is to provide Cannon with a minimum amount of air, while letting him breathe on his own when he wants to.  This graph shows us when the machine breaths for him, and when Cannon breathes for himself.  And it's real-time, so you can tell with every breath he takes whether the machine did it for him or if it was him trying to do it on his own.  I watch this machine more than anything.  It's a true sign of how far he's come in 24 hours.  We've watched the machine do all of the breathing (tall narrow breaths, meaning high volume and little pressure), to watching Cannon do more and more on his own (short fat breaths, meaning little volume and high pressure).  As Cannon's breaths start to look more tall and narrow, we'll be getting closer to getting off that machine.  You should come watch, it's a real hoot.

Communication

Last night I was taking some more time next to Cannon in the ICU (with all the family here, we do a lot of switching out).  He's been heavily sedated since the surgery to keep his stress level at 0, protect his heart from too much activity, keep him from pulling out his lines, and why not "sleep through the pain".  He's been waking up more and more, looking around for a few seconds and nodding back off.  So we thought.

About 9 PM was 24-25 hours after surgery.  Cannon opened his eyes, noticed I was there and looked at me.  Then his mouth started moving.  All the air going in/out of his lungs goes through a breathing tube, and since that breathing tube goes down his throat past his vocal cords, it's impossible for him to move air past his vocal cords and make a sound.  We've seen his lips move before with his eyes closed and figured he was likely dreaming.  But this time, his eyes were open and he wanted to say something!  We'd already had an instance that he responded to the command to squeeze a hand, which he did very deliberately.  So when I didn't read his lips the first time, I told him I didn't understand and to try again, which he did.  I didn't hear a sound, but it was clear what he was saying: "I hate this place!"  Then his lips contorted and his eyes squeezed into a silent cry.  Wow, this is fun.  So let's look at the bright side: he's communicating effectively.

I told him nobody likes this place, he was doing great, just relax and sleep for now, the surgery is over we just have to recover, motivate motivate, encourage, etc.... Squeeze my hand.  [Squeeze]  I love that trick!

Tori came in soon after this episode and I explained to her what had happened so she'd be prepared.  He had been awake, and he wasn't happy.  We were talking over him across the bed and discussing the details of what was going on.  Things I didn't think I'd want Cannon to hear, but it's OK cuz he's asleep, right?  I thought I better check, so in normal conversational tones I just happened to ask "Cannon, are you awake?"  He opened his eyes and nodded his head.  Now we have an inequality: closed eyes is not equal to sleep.  Sedation seems to make him relax to the point his eyes are closed, but even if the eyes are closed the ears are still open.  Time to filter the conversations!

Pic of Cannon in ICU: Parental Guidance Suggested

Recovery: Day 1

We got to the ICU at 5:45 to see how the night had gone.  Tracy was still there, we'd gotten no calls through the night and got a fast few hours of sleep.

Over night, things hadn't been smooth and it was probably best we weren't there.  There's nothing we could have done but worry and get in the way.  Cannon's heart had gone into "Junctional Rhythm".  This means the signal to beat was hitting the bottom of the heart but not the top, so the atria weren't beating and his heartrate dropped into the 80s.  During the surgery, 3 electrodes had been installed, a ground, one electrode for the atria and one for the ventricles.  They hooked the pacemaker up to the electrodes when his heart went into the junctional rhythm and re-established a good beat.  They set the pacemaker to 115 BPM so if his heartrate fell that far down, the pacemaker would kick in.  As I write this, he's held a 130+ heartrate and the pacemaker hasn't re-engaged.  In addition to the heartrate scare, his temp jumped up to 102.8 and his lactates had increased to 2.8.  His kidneys weren't putting out like they wanted, but weren't too far off the scale.  Atrial pressures were at 15 and 18, and they were using steroids to help control the blood pressure.  The doctors were saying nothing was outside of the range of expectations, but Cannon has a ton of challenges to overcome.

Later in the morning, I came to see Cannon... he was pulling against the straps holding his hands down (to keep him from pulling sensors out).  I grabbed his hand and put it down flat, rubbed his arm to help him relax... he looked right at me.  He'd done this yesterday, but this time you could tell the lights were on, Cannon was home.  He looked quite peaceful, I talked to him and told him to take it easy and squeeze my hand.  I was one HAPPY DADDY when he did!  Our son is there!  The hard part was keeping my head on at this point, because anything can still happen, but what a great sign of hope.  He dozed off right after that.  He perodically opened his eyes and looked around slowly, not seeming to be in any pain or concerned about anything.

When in ICU, say YES to drugs!!  Despite having his innards jumbled up and handled, he's feeling no pain.

As of 3:05, I haven't seen him in a couple hours but others have and his numbers are doing great.  We've been roaming around, trying to keep Colton busy and getting lunch.  We have my parents here, my sister, Mike, and friends from church are coming and going.  I thought this would be the boring period, but we're busy.  Between sending updates out in many directions and managing visitors, we don't have time for much introspection or pity-parties.  Things are just slowing down enough to update the blog, then see Cannon again here shortly.  I love their visiting policy: parents have absolute 24-hour access to their kids.

A huge thank you to everyone who has come to visit and is supporting us in prayer.  Both are equally necessary and Tori and I are eternally grateful!  Jesus praised those who fed him, visited him in prison, supported him in any way.  His disciples said, "Lord, we never did that for you!"  He said, "Whenever you do this for the least of my people, you do it for me."  We fall into that category (the least of my people).  So God will remember your service to Him as you support us.  You will be blessed.  In our gratitude to you, there's nothing we can do to top that.

Update #9: ICU - 9:30 PM

In meeting with Dr. Fraser, he estimated it would be another hour and a half, so we should be able to see Cannon by about 8:30.  By 9 we still hadn't been called up, so I went and asked.  I don't believe the ICU was quite ready for us, but they agreed to allow us up there.

Seeing Cannon for the first time after surgery wasn't as traumatic as you'd think.  Wasn't much blood and gore, no open chest wounds.  Lots of tubes and sensors, but pretty mild.  His breathing tube was in his nose, not his mouth.  When I asked, it was explained this was because they can feed his little body with enough air through a tube that fits through his nose... didn't need a tube so big that it would go through his mouth.

The team that was in charge of his care was Tracy (ICU Nurse), Dexter (respiration), and Fidel (not too sure of his role, but I know he helped Tracy a lot).  They were all clearly knowledgable of their duties and what to do, and weren't intimidated by Cannon's delicate condition or extreme case.  Tracy shared with us immediately the reason we were delayed in coming up to the ICU was because Cannon was having a rough time coming out of anesthesia and his heart wasn't quite cooperating.  One doctor summed it nicely: they are "negotiating" with his heart, trying to find a compromise between the heart and medicine.

We got a full download from Tracy of everything connected to Cannon and what it does.  He has an IV in his right foot, a cath to drain urine, 3 chest tubes to drain the heart cavity, an atrial line measure the pressure in the atria, three electrodes connected directly to the heart (ground, atria, ventricle... this proved handy), an atrial line in his neck, and another in his wrist to give massive doses of meds straight to the heart, a pulse ox sensor, a standard IV, a sensor around his head to measure oxygen in the brain, and a breathing tube through his nose.

We could only have two folks in ICU at a time, so we had to cycle all the family in quickly.  The ICU was supposed to close to visitors at 9, we were up there well after because the surgery ran so long.  The staff was very understanding and allowed us to cycle the whole family through to see Cannon before leaving.  In the midst of the cycling of family members, Cannon's eyes opened wide and looked right at me, but it looked like no one was home (just a bodily response to some kind of stimulus).  Family eventually left, Tori and stayed until midnight or so.  While we were there:
Heartrate: 139 +/- and holding
Blood Pressure: 69/47 (looking for 92/60)
Atrial Pressure: 18 (looking for 8)
CO2: 40 (looking for 30)
Pulse Ox: 96 (looking for 100)
Temp: 102 (looking for 98.6)
Lactates: 1.9 (looking to stay under 2)

Tracy assured us Cannon would NOT wake up through the night (yay for super-meds) and we felt comfortable enough to leave his side and go get a nap at the hotel.  We're blessed to be able to walk from Cannon to our hotel room without ever going outside.

The day wrapped up without much fanfare.  The surgery was complete, Cannon survived and was in a coma-like state under the best care in the world... a TCH ICU.  His numbers weren't great, but acceptable.  In our state of mind, a heart-rate over 0 was GREAT!!

Update #8: 7:00 PM

It ain't over till Cannon is in the ICU, but it sure is close!  We just met with Dr. Fraser so the main part of the surgery is complete.  They are closing up shop and making sure he's ready for ICU, taking X-rays, handing over responsibility, etc...  We should get to see Cannon around 8:30.

One point Dr. Fraser made clear is that this was a LONG surgery.  For a man that eats stress for breakfast, you could tell today was long and stressful.  But he's certainly doing what God called him to do, and I think God works a lot of his miracles through him.  The success of Cannon's surgery is a result God's grace, and Dr. Fraser's (and his team's) work.  We're not near out of the woods yet, we're just over the surgery hurdle.  Now comes the hurdle of recovery.  I'm sure there's as much risk in the next 24 hours as the last 12.  It seems like it to my small brain anyway.

Dr. Fraser's summary of the surgery:
1) We cancelled the last surgery on the 20th because there was another baby that might need a certain size and type of valve.  Dr. Fraser didn't want to proceed without having every possible size/type he'd need.  So he decided not to proceed on the 20th.  The valve he used today was the one he wouldn't have had that day.

2) I mentioned in a previous post that it seemed odd to send Cannon in for surgery when he seemed so healthy.  Everything was comfortable in life, why change?  Well, when they opened his chest up, they found his heart walls were beginning to harden and the heart was starting to enlarge.  Waiting longer would have been detrimental to his heart in the long term as well as making the surgery more difficult.  If we'd waited until we saw a sick Cannon, it would have been too late and we'd be doing a heart transplant or a funeral.

3) The aortic tricuspid valve was getting pulled into the heart because of an eddy effect caused by blood rushing through the hole between the ventricles.  Because we did this repair at this time, that valve shouldn't continue deteriorating or start leaking.

4) They had a hard time getting the bleeding under control but now have it wrapped up.

5) We'll have the pleasure of doing this again in 5 - 10 years.  Cannon will outgrow the conduit that goes from the heart to the lungs and that will have to be replaced.  It'll be full-blown open-heart surgery, complete with a heart/lung bypass machine.

6) The switch of the main vessels went well, no issues.

7) Patching the hole between the ventricles went well, no issues.

Thanks again everybody for your prayers!  We've been at relative peace today, and there's no way we could have been without our faith and your prayers.  We thank God, and we thank you!

Update #7: IT'S ALIVE!! 5:30 PM

We are almost out of the OR!  They have re-established blood flow through the heart to check for leaks.  Better than that, his heart has been restarted and it's beating on its own and normal!  No pacemaker needed at this point, no major leaks (minor leaks are normal at the sutures), blood pressure is doing good, vitals are looking good.  There's a HUGE sense of relief that he'll likely emerge from this surgery in good shape.  Even though we're celebrating now, we know there's a rough road ahead.  The next week of recovery won't be fun for anyone, especially Cannon. 

I think the next 24 hours are going to be really tough on his heart as the ventricles learn their new roles.  The large ventricle that's supposed to supply blood to the whole body has only had to supply blood to the lungs.  Easy job, no pressure for a large ventricle.  I'm sure it's gotten lazy.  But now, it's doing the job it was always meant to do and supplying blood to the body.  I'm sure this isn't easy for the muscle to learn the new role quickly, but I do know God built some machines that are capable of incredible feats of healing, not to mention that with his help Cannon's heart can be 100% functional in its new configuration from the first beat!

We should be seeing Dr. Fraser soon, which would indicate the completion of the major functions of the surgery.  All that would be left is closing up, dressing, and pushing to ICU.