God never ceases performing His miracles

Every time I look at Cannon I am reminded how GREAT our God is.

Cannon is recovering very well!
He is laughing and talking out much more than he ever has. I am certain he feels such a sense of relief with his body not constantly being worked like he is running a marathon at all times of the day.

We are all eager to see him is full action in a couple more weeks. He is doing well with mom being such a worry wart with every move he makes. He even asked me yesterday if something he did made me nervous. :) He said it with a smirk as if he knew it did, and I just smiled.
I sure am blessed to have that little guy with his million dollar smile.

Since we have been home he hasn't liked looking at his scar or letting it be visible. Last night after bath time he came out without a shirt on and said " I'm going to go without a shirt tonight". So we grabbed this picture of him. What a smile!

Today is mommy's weekly appointment to see how baby Scout is
doing. So the boys rode with daddy this morning to stay with Gupa and Nana for the day. They were excited to get a different scenery. We are all beginning to get cabin fever. It will be nice when we can get Cannon out and about without too much worry of his lack of immune system. Until then we will continue to find fun things to keep us busy.

Thanks to my wonderful husband!!

Thank you for spending so much time updating the blog. Through one of the toughest times of your life, you took the time to reflect your thoughts and emotions. The way you poured out your heart is amazing and I am so thankful for it. To have this information for Cannon to see when he is older is a great idea and I am thankful for it. It will also show him what a great daddy he has. I am blessed to call him my husband!!
I love you Marc King!

So Long to TCH: You've been great!

We had our first post-op appointment at 9:50 today, followed by an echocardiogram appointment, all at TCH.  The first appointment was standard fare, taking vitals... yep, he's still alive.  Everything looked great, his saturation was 99%, a number Tori and I still can't get used to seeing.  After vitals and a number of questions from the nursing staff, got an X-ray, then on to the echocardiogram.  We had Colton with us, this was his first time to join us for an echo.  He was a perfect 4-year-old, staying quiet the whole time.

The echos take longer than they used to.  There seems to be much more to look at now that Cannon has so much equipment in his heart.  I'm amazed that each time we go for an echo, X-ray, or otherwise everyone there seems to be fully aware of his condition and the repairs that were made.  No one is surprised when they look at the images and see hardware in place.  Our echo tech gave us a hint of why: all the images/information they get from Cannon is put into a report and presented to a number of doctors.  I know that it was a team of folks that have been reviewing his case for years.  It seems to be a rare set of defects that gets a lot of attention... the attention is because with a rare case that's repairable, everyone wants a chance to study and learn from it.  We ran into this years ago when Cannon was two.  We found ourselves at TCH for a couple nights, and it seemed every doctor in the hospital came to listen to this rare heart.

The surgeon that performed Cannon's surgery is the Surgeon-in-Chief for TCH.  In our eyes, he's a celebrity.  I'm more excited to see him walk into the room than I imagine I'd be if the president walked in.  Or course, I'm biased.  I believe God worked a miracle on Cannon through Dr. Fraser's mind and hands.  We have our son, and a good chance to have him for a long time, because of this man's work.  I know Dr. Fraser didn't do this single-handedly, he's the leader of a team and a servant of God.  But how we got the top heart surgeon at TCH to work on our son is something we can only attribute to God.  If you care for a quick bio summary, go here:

http://www.texaschildrens.org/About-Us/Leadership/Charles-Fraser/

Back to today's events: Once we were done with the echo, we went back to our exam room and waited for the results.  When we left the hospital Saturday, the big thing we were keeping an eye on was the fluid around the heart.  We've been feeding Cannon diuretics, so we expected to see less fluid around the heart with today's echo.  And that's just what we got: no fluid around the heart. 

There is however fluid at the base of the lungs.  Not a major issue, as there's more room around the lungs for fluid to amass, but still needs to be watched.  We'll keep Cannon on diuretics and expect this to go away.  We'll find out 8/28 when we meet with Cannon's cardiologist for the first time since surgery (if you didn't know, there's a difference between the cardiologist and the surgeon).

The only other items we discussed were Cannon's crick in the neck which is very common after surgery, and the rash on his face from the tape that held his breathing tube in place.  All in all, the trip today was a wrap-up to the surgery to ensure all was well.  Because all is well, we won't see the surgical team for a long time... if all goes well, Cannon's new hardware should last 5 to 10 years.

I'm going to miss them.  But I'm not going to miss their workplace!!

Are we there yet?

When you have a major surgery for your kid looming around the corner, you find your mindset in a strange state.  You're constantly aware that the day of surgery is approaching fast, and you watch your kid doing things, and think "Will this be the last time he gets to do this before his surgery?  Will  this be the last time he gets to do this at all?"  I don't wish this on anyone, and if you've been there you know what I'm talking about.

A month ago, we were supposed to have Cannon's first surgery on Tuesday, June 12th.  That was delayed to Wednesday, June 20th.  So we showed up on Tuesday June 19th, had pre-op, but surgery was cancelled that evening.  The next day, we were told there was little chance we'd proceed with the surgery that week, and it would be some time out.  Everyone left the hospital and went home, we packed up our hotel room and were last to leave.  As we were driving up Fannin to go home, we got a call that surgery would be the next day, June 21st.  Back to the hotel to unpack for a weeks stay, again.  That one was delayed at the last minute after Cannon had been given the pre-anesthesia meds, just before going back to OR.  We were rescheduled for the surgery date that actually took place, July 6th.  You know the rest of the story.

Well, the stay in the hospital is over.  We left the hospital Saturday afternoon.  I won the bet since we didn't get Cannon out of the front doors until 1:45 or a little later.  The rain was coming down hard, but we were feeling great!  We ran a number of errands on the way home: we had to get a baby monitor so we can hear Cannon call from his bed if he needs anything, we also needed food and all his prescriptions.  Cannon can't be in public at all, so he had to stay in the car with mommy while I did the running.  We finally pulled in the driveway about 5 PM and pulled out the cameras to record an event we weren't sure would ever happen: Cannon walking back into the house!! 

We were all starving having skipped lunch anticipating leaving the hotel room at any minute, so we sat down and had some pizza first.  Then we got Cannon comfortable and unloaded the car while he watched TV.  His first order of business was playing a Wii game he'd gotten as a present while in the hospital, so once we found it we loaded that up for him and he got started.  Tori and I just sat there and watched a miracle... we never thought we'd be "here", it was too good to be true.

I forgot to mention when I first posted this: after we'd been home a bit and eaten lunch, I went outside to check on the dog.  She's gone.  Not sure where she went.  Half of her food is missing, so apparently after a few days she got tired of waiting for us and took off.  Our next door neighbor's dog did this a while back and gave us all a scare.  He came back home weeks later on his own accord.  The boys sure are hoping our dog comes back.  If anyone around here sees a three-legged Catahoula Hound, let us know!  Tori and I can tell we're numb.  Normally we'd be pretty tore up about this, but after the last couple weeks we can't muster up the energy to care a whole lot.
As of today, Cannon still moves around slowly, body still recovering (we don't have to slow him down yet).  He's still sore all over, and apparently has a severe crick in his neck.  Whenever you call him, he looks like Batman when he turns around: he can't turn his neck, so he turns his whole body.  Although he's moving slow, we're having to retrain him on getting around.  We did most of this training in the hospital: he can't sit up/down or get up/down without assitance.  For the most part, he can't use his arms for much of anything for a few more days.  Then we'll let him use his arms to get up/down, but no lifting for another month after that.  If I remember the song correctly, his arm bones are connect to his breast bones, and the breast muscles are connected to the breast bone.  So if he pulls his pecs too hard, it'll pull on the breast plate.  The breast plate is wired together so I don't think it'll come apart, I just think it'll cause him more pain than his parents can tolerate.

Yesterday was Sunday, our first full day home.  We did NOTHING which was just what Dr. Daddy ordered.  Because Cannon was on a heart/lung machine for a number of hours during surgery, his blood is "scrubbed".  Long story short, this means he has no immune system and is susceptible to sicknesses his body could normally fight off.  This means no public places for a couple weeks minimum.  We're gonna need some bubble wrap for this kid!  It was a good day of nothing but catching everyone up on sleep and resting some worn out bodies.  We watched movies, ate popcorn, and played the Monster Truck game on the Wii.

The only issues we have right now are Cannon is in extreme discomfort from the scar itching on his chest.  He's stopped complaining, but he's constantly shrugging his shoulders to get his shirt to rub the scar.  We told him if he scratched with his hands too much it'd pull of the strips and wear out the glue that's holding the scar closed.  It's an extreme example, but in reality it would likely just start bleeding and get infected. 

Cannon is also swelling around the face a bit.  We're not sure if this has anything to do with his body retaining fluids or not.  He's still on a diuretic that's supposed to help him get rid of fluids.  We'll go in for a post-op tomorrow to find out if he still has fluid around his heart, and to get the last stitches out.

So as of today, we're not there yet.  But we're certainly in the neighborhood!

The Journey Begins

That is, the journey at home.  Because the journey in the hospital is OVER.  We are going home today.  We've placed bets as to who guesses the closest time.  The winner of the bet, uh, wins.  There's already 2 losers; their bet time has already passed.  I'm betting for 1:45, about 45 minutes from now.  We're just lounging around the hospital room, playing games and waiting for the final painkiller and to get kicked out of here.

Shutting down now, my next post should be from home.

A Note to Colton

Colton,

Through the last 10 days you've been here with us at the hospital, going through Cannon's surgery.  But your mommy and I have been consumed with taking care of Cannon: talking to doctors and nurses, trying to make sure all the right decisions are made, all the needed care is given, and that Cannon is as comfortable as possible.  While this has been going on, your grandparents have been taking care of you.  We get to see you every now and then, but for the most part I feel like we're strangers.

The great thing is, you don't seem to mind too much.  Your constant smile and desire to make us laugh have provided much needed moments of stress relief and laughter.  You've been an outstanding kid, rarely complaining and showing perfect behavior... makes your parents very proud.  Thank you for your patience while our family endures this period.  Your understanding has made this much easier, your lack of understanding and selfishness could have made this a much more difficult time.

Every night, you go to the Holiday Inn with your Papa.  He says you're a perfect little boy and so easy to take care of.  In the mornings you get to sleep in as long as you want, and Papa feeds you and brings you to the hospital to join us.  When you get here, you always run up to me and mommy and give us big hugs and kisses to go along with your huge smile.  It's our favorite part of the long days.

When you're here, you obey very well: you have to sit still and be quiet.  At 4 years old, you're doing better than any other I know would be able to do.  You're slow around your brother, being sure not to hurt him.  You look at him with concern in your eyes, and wonder when and if you'll ever get to play with your best friend again.  Of course, we always tell you "soon", and you move on to your next adventure in the hospital room.

You are an athlete already and have tons of energy to burn, and every now and then throughout the day you have to go for a long walk/run to burn off energy.  You usually go with Papa, or Gupa, or Nana on trips through the medical center since there's a constant flow of nurses and doctors for mommy and daddy to talk to.  These trips are always fun, you're always finding interesting things you've never seen before.  When mommy and daddy do finally get to go out with you to pick up dinner or take a walk, you're always eager to show us what you've seen.  You're just an extremely happy kid and we can't thank you enough for your patience through this.

As Cannon gets better, you're able to sit next to him and be funny and laugh with him.  There's not much fun he can do but play video games, and you watch him play like you were watching a movie.  I'm amazed how you watch without complaining too much that it's your turn to play or that you're bored.  You also love to watch a DVD player for a good while, or play with the controls on the bed and make your brother sit in funny positions he doesn't like.  You ask constantly if you can sit in the bed when Cannon's not in it.  I don't blame you: I'm sure it seems that the kid in the bed gets all the attention from his parents and you just want in on the action.

You've done great missing out on attention from your parents.  We're going to give you as much attention as possible and make time for you in every way we can.  Unfortunately it's not going to get much better.  We'll be home in the next couple days and we'll have to get Cannon settled in.  We have to make sure at all times that Cannon is safe from any bumping or lifting or physical activity; all of which will take away from the time we can spend with you.  If that's not bad enough, in a little over a month your little sister will be born.  So my apologies in advance that attention will shift from Cannon to Scout.

I hope you read back on this one day and decide you either don't remember any of this, or you do remember but don't mind because you were having so much fun with your grandparents.  I hope you don't read back on this one day and realize this is why you're so messed up or try to use it as an excuse.  If you find yourself in prison, that's your own fault!

With all the attention Cannon has been getting, I just wanted to take a minute and voice my extreme gratitude to you for your patience despite the lack of attention from your parents, and to let you know that even though Cannon is getting all the attention now, it's in no way a reflection of our love for you.

With love you'll never understand,
Your Mommy and Daddy

More Pics of Cannon in ICU/Hospital

Colton looking at Big Brother.

Nice War Wound!  Central drain tube and arterial line removed.

Waking up in ICU and breathing on own (no breathing tube!)

First time out of bed.

Pulling off the dreaded stickers.

Grandpa, Cannon, Daddy, Papa taking a walk.

Recovery: Day 7

Since we've been in the hospital room (after ICU), we've started every day with drawing blood.  Before surgery, this was a HUGE scary ordeal.  Compared to what Cannon's been through up to this point, getting poked by a needle is now minor.  Until yesterday, when the nurse couldn't find the vein and did some exploratory work with a needle.  This morning, our nurse went straight for the blood but gladly attempted to do it via the IV.  It took a LOT of work and patience on her part, but she finally got enough.  She came back a few minutes later... the blood had clots and couldn't be used so we had to do it again.  This time we had to put the latex band around his arm on bare skin to restrict enough (we've been putting it over his sleeve to keep from pinching... another avoidable owie).  This got him teared up, but we eventually got enough blood out.  But today should be the last day in the hospital.

We've been preparing to leave since yesterday because Cannon is doing so well recovering.  Staff is telling us that we just need to get a final echo to make sure fluids around his heart are decreasing and not increasing, then go home.  Tori took some time to pack up the room and get organized for leaving. 

My parents got here about 9, our new daily routine.  They had donuts and kolaches.  Papa got here with Colton about the same time.  We spent the morning on Playstation, watching cartoons, building Legos, going to the playroom.  Mostly just waiting for the painkillers to show up, and to be ready for the long awaited "get-this-done-and-you-can-go-home" echocardiogram.  We got the painkiller about 10 which was just in time, Cannon was starting to feel it.  We got our echo appointment about 11.  Got picked up by transportation and taken to echo, had a long wait of about 45 minutes.

In the echo room, our technician was quiet and diligent; they usually are.  You have to be an expert to use that machine and to know what in the world you're looking at or for.  I was studying the technician's actions and realized she was repeating the same thing over and over again, she was showing signs of stress and frustration.  Cannon was completely still so I knew it wasn't something he was doing.  Tori and I have seen this before.

When Cannon was a few days old and still in the hospital after birth, we didn't know he had any problems.  A doctor comes by and does a thorough physical on all newborns.  He told us that Cannon had a hole in his heart, but not to worry because many babies have holes in their hearts when they're born and they often heal on their own.  We followed up a week later with a pediatrician, and the "hole" was still there.  At this point, we're only going off what doctors can deduce with a stethescope, no further testing was done because he seemed otherwise healthy.  Acceptable blood pressure, no blue fingers, no blue lips, etc... When the physician heard the hole still there, he referred us to a cardiologist.  The cardiologist deduced the same hole, and ordered an echocardiogram.  When we went to that echocardiogram, we thought they'd look inside, tell us it's a hole that'll heal in a week or two.  Maybe need some meds.

That was our first of many echocardiograms.  The echo technician began and it was clear she knew what she was doing.  An echo machine is like an ultrasound machine: a screen to look at the images from inside the body, and a panel with a keyboard and a ton of other buttons.  You can tell when a tech is good because they can navigate the hundreds of buttons on the machine without barely looking at them.  You could just watch this girl work and know she knew that machine inside and out.  But she seemed confused by the images of Cannon's heart on the screen.  How can she know that machine in and out, and not know what she was looking at on the screen?  As she looked at Cannon's heart on the screen, it was clear she was lost.  It took a long time, and she eventually called the cardiologist in.  The cardiologist came in, spent some time looking at the images on the screen, and said she'd have to get back to us.

So when an echo technician looks stressed and lost while they're looking at Cannon's heart, we get a little apprehensive.  That's why I was apprehensive today when our tech was taking a long time and getting stressed. 

Through all this, Cannon was a champ.  He quietly watched Tom & Jerry on the TV while the tech did her thing.  At one point he started playing with his hair with his right hand.  The tech asked him to stop and he put his hand right down and laid as still as a board without complaint of how long it was taking.  Then the tech moved the wand down below his sternum and pushed down and pointed it up to get a bottom view of the heart.  Well this spot just happens to be where his central drain line was and there's a large hole stitched up where she was putting her wand.  Cannon was trying so hard to be a good boy, but he couldn't stop the cry.  He laid there crying silently while no one was looking.  Tori and I tried to comfort him, but couldn't stop the pain.  The technician realized she couldn't get the view she needed without causing considerable pain and gave up the effort. 

At this point, the tech has spent a considerable amount of time looking around at Cannon's repaired heart.  She tried to call another tech in for another opinion, then got a doctor in. It seems that there wasn't necessarily anything wrong, it seems she just wasn't confident she knew what she was looking at.  So after a long trip to get an echo, we were back in our room.


We killed more time with family, and it didn't take long for the cardiologist to come in to give us the update on the echo.  The fluids around the heart are increasing, and they can't let us go home like that.  If the fluids continue to build, they'll put pressure on his heart and it'll struggle to pump blood.  So our course of action is to start some diuretics that will help his body get rid of fluids... in summary, they help Cannon pee out the excess fluids in his body.  Very common drug.  Hopefully that means he'll pee off the fluid around his heart.  Another night, maybe two.  Guess we can unpack.  Again.

So let's understand why, I don't want to worry that my kid is facing something severe.  When a heart is in trouble, or works inefficiently, it pumps too hard, or too much, or too fast.  Since it's a muscle, it grows when it's overworked.  This was our concern with Cannon's heart.  It was working too hard, even when he was at rest, to provide adequate oxygenated blood to the body.  At 6 years old, it was just starting to harden and enlarge; Dr. Fraser verified this when he gave us the summary of Cannon's surgery.  So now that the heart is repaired, it's not under as much stress and has shrunk a bit.  This leaves a void around the heart, a void that the body decides to fill with fluid.  If we can't solve this with meds, we'll have to have it sucked out with a syringe.  That sounds as fun as pulling off your fingernails, doesn't it?

We're praying we can go home tomorrow.  The meds won't solve this problem by tomorrow, but they seem to think as long as his vitals are still perfect tomorrow the heart is handling the fluids surrounding it OK and it's not an emergency.  We have to come back next week for a followup anyway, and we'll have another echo then to make sure the meds are doing their job.

Recovery: Day 6

Last year, all of Houston was in a drought.  A few months ago we got out of the severe drought conditions with some good rains, but recently rain had been scarce.  This whole week we've been in the hospital, the rain has been non-stop!  This morning we woke up to REALLY dark skies and good stormin' outside.  At 8 when the sun is usually getting high in the sky, there was little light to be found.  Everyone that comes in has an umbrella or a wet shirt (unlike the movies, you DON'T want to see these wet shirts).

We had a typical morning, meds and vitals through the night.  I admit the fatigue has overcome the edginess to the point I don't wake up every time they come in to check vitals.  This is leading to more sleep and a much more tolerable day.  We still have to get up and wake Cannon up a couple times, but it's much better as he gets further away from surgery.  So if you find yourself in this situation, bear with it... it gets better.  The one trick we've found that really helps all this is to wait for a good time of night when your patient is falling asleep or has just fallen asleep.  Then have the nurse come in for all the meds possible to be given at that time, and have the PCA come in and check vitals one more time and ask them to wait as long as possible until the next trip.  We got this just right one night and had 5 hours uninterrupted.  A new record!

One glitch we had this morning was giving blood.  Although Cannon has an IV in, it's really only good for administering meds.  Drawing blood is a different story.  Yesterday Cannon did great!  He sat there a gave a whimper as the needle went in, and it was over.  Today, the nurse couldn't find a vein that was giving up the goods.  So there was some digging and prodding.  I'm sure we've all been through this a time or two, but it's tough for a 6-year-old.  After digging in three places, the nurse still couldn't find the blood.  We asked him to try the IV even though they usually don't give any blood.  What do you know, it worked.  It took a flush and some patience but the blood came.

We had all the same staff visits as usual, typical busy morning.  The problems we're dealing with are fluid around the heart and he just can't pee enough.  The fluid around the heart is OK as long as it doesn't increase, so we'll have an echo tomorrow to find out if it's increasing or not.  Regarding the pee, we've been tracking the volume of fluid he's been drinking from day one.  He's always taken in a lot of fluids and he's taking more and more now, almost up to normal.  But his output is tracking with his input.  He should be putting out a half liter, but he's doing 20% of that, sometimes as little as 25mL.  I think the problem is we've been spoiling the kid and giving him whatever fluids he wants.  We don't usually spoil, the Bible tells us not to.  But when you have a kid going through this, exceptions have to be made.  EVERYTHING in their life is misery, and without some positives (getting what they want), you're just setting up for a fully miserable experience.  Well, in this case Cannon likes Sprite.  We've been giving him Sprite all the time and not enough water.  Today we decided to force a ton of water down him, and Papa (Tori's dad) did an outstanding job getting this done.  If you need someone to drive a task to completion, this is your guy.  Between the water and a diuretic late yesterday, output started going up.  Not where we want it, but getting closer.

When we started this little trip last Thursday, we got a room in the Marriot across the street.  Methodist Hospital is one of my customers, I've been working with them for 5 years or so.  This has proven handy.  I can get us from the Marriot, through Methodist, into the tunnels and all the way to our room in TCH West Tower without ever going outside.  We wanted this availability while Cannon was in the hospital, so Marriot was our easy choice.  We'd checked in Thursday for Cannon's pre-op, had used it through Cannon's stay in the ICU, and the last couple nights hadn't used it at all.  We went this morning and cleaned it out and checked out.  I think we could have checked out a couple days prior while we were staying in the hospital, but we were so busy with visitors and doctors we'd never had a chance.  After we checked out, we went to lunch while Cannon got some quality time with his Papa.  They did some laps around the floor and played Playstation2 (the Playstations come with the hospital room and you just have to check out some controllers and games).

When we got back to the room, Cannon wanted me to play the Playstation with him.  I asked the charge nurse for another paddle, they didn't have any.  Why?  It seems that when folks come to TCH for medical treatment, receiving the best treatment in the world isn't enough.  Somehow they think they aren't getting enough for their dollar... or whatever the reason, folks steal the Playstation paddles.  And instead of impacting the hospital, the folks that steal Playstation paddles impacted quality time with my son.  If you ever stole something, there's a little twinge of guilt for you.  I didn't get to play Playstation.  Now I'm mad!

We had some of Tori's coworkers drop by this afternoon and bring some great goodies that Cannon will love to play with at home!  We also had some good old family friends drop by to help the time pass by.  Since we've been managing his pain well, Cannon has had an incredibly great attitude.  Really a different kid.  I'm waiting to see what happens when we get home and get off pain meds in a few days.  That's when we'll see if this great attitude is just a result of being high on drugs!

We had a visit from the surgery team today from Tara.  She gave us instructions on caring for Cannon once we get home.  We realized this is going to be hard, but in a good way.  Have you ever heard of a "chest cavity"?  This refers to the box God built around our vital organs.  It's made of the ribs coming off our backbone which wrap around from back to front and connect to the sternum.  Our vital organs are protected from front impacts by the solid connection of the ribs to the sternum.  That makes the solid "breastplate".  For all practical purposes, a recovering open-heart surgery patient has no "breastplate".  During the surgery, it's cracked open to allow access to the heart.  At the end of surgery, they use stainless steel wire to "tie" the breastplate back together.  They take a length of wire, go in through one side, behind the breastplate, back up the other side, then twist the wires together, and fold the twist down so they don't poke out the skin.  They repeat this process like "bone stitches" the entire length of the breastbone.  Makes for an interesting X-ray!  Cannon has between 6 and 10, I didn't count when I looked at his X-ray.  The bone will eventually grow over these steel wires, so they stay in place forever.  Even in future surgeries, they'll just be adding wires.  But even with the wires, Cannon's breastplate is still 'flimsy'.  Any impacts to the chest could be quite problematics.  Not just impacts, but excessive movements of his arms, or lifting weight.  Basically, he can do nothing for 6 weeks from the day of surgery while that breastplate solidifies again.  That's why this will be hard in a good way.  It'll be good that he's going to want to be more active, and bad that we'll have to restrain that activity.  That'll be tough.

As we watch Cannon improve quickly, we're amazed to learn that we'll be going home soon!  Once they are satisfied with how much pee we have coming out, and verified that the fluid around his heart isn't increasing, we'll be outta here.  Hopefully tomorrow!  I have to admit there's a bit of comfort in staying here.  Help is always a "red panic button" away.  If something happens to Cannon's wound, or if he is suddenly wracked by uncontrollable pain, there's a quick solution.  At home, we're a long way from help.  I'm used to being able to fix anything; patch wounds, stop bleeding, make the pain stop.  Tori and I will FEEL helpless if something happens to Cannon's chest/heart, but I know God will keep him safe.  But even if he does fall, it would take some pretty special circumstances for it to be fatal or severely harmful.  Doesn't help us much: we still feel like we're bringing home a piece of cracked glass that's just on the verge of breaking.

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!

Recovery: Day 4

After sleeping all day yesterday and being removed from the narcotics, we knew Cannon was relatively sober, meaning his sleep last night would be relatively normal and any sound could wake him up.  Thus, we would not have the priviledge of a hotel stay last night!  Tori and I agreed to split the night up, I'd take till 2:30, then she'd take the rest of the morning.  She went down to 17th waiting room to sleep on a recliner while I stayed with Cannon.  Poor girl is 33 weeks pregnant, I doubt that recliner was much fun at all!

Cannon was in a great mood... all night (at least during MY shift).  From 11 PM to 2:30 AM we watched a couple movies, talked about his surgery, what he remembered and didn't remember.  He snoozed off and on but didn't do any real sleeping since he'd slept all day.  He wasn't on any narcotics to sedate him, but his pain meds made him sleepy.  Made for interesting conversation... like talking to a narcoleptic.

After complaining about his "weewee" hurting, I asked the doc if the cath could come out soon.  I was thinking "the next morning" or "tomorrow afternoon".  They were thinking "Now".  As soon as the doc left, the nurse came back to the bed with a kit and at about midnight we started with removal of the cath.  I was sure to warn Cannon that what was about to happen wasn't an option and was going to hurt.  He was trying to gauge how bad it would hurt; he asked if it would hurt worse than drawing blood.  I said I didn't think so.  Ooooops!  I was way wrong!  On the first tug he was crying and said it hurt way worse than drawing blood.  On the second tug he asked what was in him that had a knife on it.  On the third tug he asked if it was a bullet in his weewee (you can't make this up).  Of course, we were constantly reassuring him it was just a tube.  When we finally got it out, he asked how bad he was cut and how much blood there was.  We told him to look and he was amazed he was clean as a whistle with no blood anywhere.  He actually recovered very quickly from this and was glad the tube was out.  The funny part is he's still not able to stand or walk, but somehow he's gonna pee!

At 2:30, Tori came up from her recliner nap and took her turn.  While she was there, they tried to give Cannon Tylenol for pain between shots of morphine.  He threw all that up on his favorite blanket making sure that's he'd stay in pain and wouldn't have his blanket for comfort.  In his state of mind, the blanket wasn't a huge issues, but the pain was keeping him up.  All night.  Since he was awake, they took the opportunity to remove the arterial lines in his wrist and ankle.  They also quit allowing fluids at 4 in preparation for having his last two chest tubes and the pacemaker wires removed.  When I got back at 6, he was at the end of a 30 minute nap.  With all the beeping machines and further removal of hardware, he'd probably gotten a couple hours sleep total all night.

Sleep or no sleep, the show must go on.  Shortly after I got there at 6, we had another encouraging milestone: Cannon got to get out of bed!  It was a short trip to a chair next to the bed.  The trick is he can't use his arms.  This applies to anyone who's had their breastbone broken to allow access to the heart.  Engaging the arm or pec muscles will pull on that breastplate and the wires holding it together.  That also means a parent can't use the kids armpits to pick him up.  THAT'S a tough habit to break!  I got a quick lesson in handling/moving/carrying and we got him situated in a chair.  He swallowed the pain well and got into the chair and sat there peacefully and contently.  This was his first time off his back since Friday (it's Tuesday).  It was great to see!!

Cannon at this point is getting really thirsty.  Because of his heart condition, he's been thirsty his whole life because his body's working hard even when sitting still.  Being in ICU was no different, body working hard and wants fluids.  So we discussed this while he was sitting in the chair.  I asked him if anything hurt because he was sitting up.  He said his chest hurt.  I was told those tubes in his chest were very uncomfortable, especially when vertical, so I explained we were just waiting for doctor's approval to get the tubes out and that's why his chest hurt.  He said, "No, my chest hurts because sitting here is bending my scar."  Plain, and matter-of-fact, no drama.  All this kid's been through and he has yet to whine, when most adults would be giving an earful.  I'm also really impressed with his honesty, he doesn't want a pity-party or coddling (at one point he told his mommy to "Leave me alone!"... he's never had that attitude, he was drugged up pretty good).

By 8 he was starting to feel some pain (he was off continuous pain meds).  We "talked" the nurse into an early shot of morphine.  She asked the doctors if they could quickly do the tube extraction since she'd just given him morphine.  Still no answer.  I was concerned the morphine would mostly wear off, then they'd want to pull the tubes and wouldn't be able to give him any more morphine.  But they're great about pain-managment around here.  Sometimes, there's no point in feeling the pain.  By 9 we were approved and ready for the tubes to come out, but they happily gave him another shot of morphine. 

Tube removal: this is a real treat.  During the open heart surgery, 1/4" tubes are routed from the chest cavity to the outside of the body through the belly.  There's three, and they come out equally spaced across his belly.  The middle one had been removed with the atrial line, which Cannon had been heavily sedated for.  We weren't sedated now, just a heavy dose of pain meds.  And this time, Daddy got to stay and hold his hand (but I was made to sit down so they wouldn't end up with an unplanned patient in the ICU).  In addition to the tubes, wires are left poked into the heart muscle (not THROUGH) so if needed they can shock the heart into good rhythm (this they call "pacing").  These wires proved to be a life saver when Cannon's heart went into junctional rhythm previously.  His atria quit beating while his ventricles continued.  Consider the nerve that goes into the heart as a highway.  It splits off into two directions, north and south (atria and ventricle).  The signal was going south to the ventricles but not north to the atria.  They had to hook the pacemaker up to get the atria going again.  It was these wires that we pulled out first.  First wire, no problem at all.  Second & third wires proved to be quite painful, even doped up.  After the wires we had to get the tubes out.  When they were installed, the surgeons put stitches around the tube to hold it in place, and these same stitches are used to close the hole after the tubes are removed.  They freed up the tubes, counted to three, and pulled the first tube.  OUCH.  Cannon cut off circulation to my finger and let out quite a yelp.  Then we did the last tube.  Wow, what a hoot.  I think Cannon and I counted from start to finish there was 13 things we had to take out of Cannon's body after surgery, and all we lacked now was an arterial line in the neck and an IV in the hand.

Once the tubes and wires were out, we got an X-ray to make sure their removal didn't cause any problems.  We also had to sit around for an hour to make sure Cannon was stable.  Once the X-rays were cleared and he was proved stable, we got moved OUT OF THE ICU!!  Down to 15th floor we go.

Me and Tori took some time to get the new room settled in then went up to 17th floor waiting room to get the family and bring them to the new room.  We met all the staff, and got the oxygen and basic heartrate machine in place and functional.  Got a round of meds.  Visitors started coming and we were getting busy!  PT came and got Cannon to stand up, and per docs orders took his first steps!  That is 150' of steps.  Four days ago he had open-heart surgery, today he walks.  That's a miracle to me.  Considering not many years ago open-heart surgery had a high failure rate and today it's one of the most common surgeries.

At this point, Cannon's diet was limited to 1L of clear fluids and soft foods.  Having the tube removed and not able to take many fluids was tough on him, he was still thirsty and they have to limit fluid intake.  A liter is nothing for him to put away, and we went over a bit on the first night.  I think it'll be OK, he's still alive.

Other than walking down the hall, Cannon spent most of the day in bed.  We put the DVD player on his bedside table, he enjoyed that for a while.  We spent most of our time talking to visitors (staff, family, and friends).  When we got Cannon on some Tylenol-Codeine, life was good!  Time is flying now, the day is a blur of medicating and tending to every need he has.  He can't use his arms/hands for anything heavy, so he has to be lifted to each new position.  Me and my back are real proud he's a beanpole!  I'm constantly scooting him back up in his bed and lifting him out of the bed.  The only trick here is doing all this without lifting by his torso, including his armpits.  Mostly just grab his hips and put 'em where you need 'em.

We got to sleep about midnight and had the usual struggles in a hospital with constant visits and no sleep.  We did have some good luck with having the nurse come visit Cannon just as he was about to fall asleep to administer final meds and take vitals.  That bought us 4 straight hours uninterrupted... the most I've ever had in a hospital!

Recovery: Day 3

Once again, Tori and I went to the hotel last night because Cannon was to be sedated all night.  We usually leave just before midnight, walk to the Marriot, and come back by 5:something.  We had a big debate about whether to go to the hotel last night; Cannon had been alert quite a bit and sedation had been removed so we knew it was likely he'd be awake at points through the night.  Before surgery, we'd promised Cannon we would be next to him at all times since his major fear was being alone.  We discussed this with Tracy (on-duty nurse for the night) and asked her to do her best to keep him as sedated as doctors orders would allow.  This would allow Tori and I to get some rest and be ready for a long day today.  We had a long day planned: remove the atrial line in the heart to monitor pressures, the center chest tube, and the breathing tube, then start drinking very small amount of fluids.  It was an aggressive plan that we supported 100%, but we knew it'd be a long day!  So on our arrival this morning, our first question was "Did he sleep all the way through the night?"  He didn't.  And he didn't like that we weren't there.  But, grandpa said when he was in ICU he didn't remember anything, and I think Cannon was so doped last night he won't either.

Despite the incident of waking last night, everything else was great when we arrived.  He'd endured a pressure trial through the night with no problems (the ventilator is put into test mode and Cannon is in charge of breathing on his own).  And during that trial, his body's gasses were great... he was processing oxygen correctly.  At around 7, the team of doctors did their normal round and heard about the details for Cannon's test results.  Their decision was to proceed with removal of the atrial line this morning.

This is a good thing, but there's risk involved.  The line is a sensor that goes straight through the skin, through the wall of the heart, and into the atria (it was put in during surgery).  The line is put in in such a way that it's removed by a little tugging, but Cannon doesn't have to be opened up.  However, when it's pulled out the heart could bleed into the chest cavity.  Not a huge deal since there's drain lines leading out of his chest, the blood can escape the cavity and not put pressure on the heart.  And if the heart does leak they have blood at the bedside in case they have to do a transfusion.  If it's REAL bad bleeding, they also have an OR in reserve in case they need to open him back up to sew the hole closed.  Because of the risk involved, Tori and I were asked to leave.  Of course, we put these situations in God's hands, and God delivered as usual.  After 30 minutes they called us back up... the atrial line was removed, there'd been no appreciable bleeding, the central drain line was removed from his belly, and the right & left drain lines were disconnected from the collection machine and fitted with small collection bulbs (this allows him to be mobile while still having chest tubes).

For this procedure, they'd given him a heavy painkiller and a narcotic for sedation.  This would keep him calm during the procedure (I picked up during a doctor round that Cannon was still alert enough to beat on the bed during the procedure, glad we weren't there for that).  So after the atrial line was removed, we were back at the beside and Cannon was dead to the world.  Just so happened that there was a procedure that had to be done on the baby next to us, and since his bed was close to the door, we wouldn't be able to leave during the procedure.  Further, our nurse was needed for that baby's procedure and couldn't begin to wake Cannon up for the extubation (removing the breathing tube).  So we got locked in next to Cannon, who they kept on the sedative to keep him asleep while the other baby was worked on.

Once that was complete, we needed to get the breathing tube out (extubation).  The sedatives were stopped (about 10:30) and Cannon started waking up over the next hour and a half.  He would wake up every few minutes and mouth what he needed (water, get rid of this tube, untie my hands, etc...).  As he became more alert, I warned him that what we were about to do would hurt, wouldn't be fun, would feel weird, would be very scary, and he had to be awake.  He handled the news OK, but didn't want to go through it.  At 12, he took a serious turn toward consciousness... he began beating the bed and struggling against his restraints, crying without making a sound.  It was clear he was in pain all over and couldn't stay calm.  We were warned this would happen and this was the point at which we'd extubate.  Performed a couple quick tests (pull my finger, lift your head) to make sure he was sober and would be able to handle breathing on his own.  He was.  The respiratory therapist disconnected the ventilator, pulled the tape off Cannon's face, pulled the tube on the count of 3 and my son could now make noises!  Greaaaat.

The first 5 minutes without the tube was TOUGH.  Cannon was scared to death, with a severe "What's happening to me?!" look in his eyes.  He needed to cough but couldn't, and needed to breath but couldn't because he was plugged with mucous.  The respiratory therapist had removed a bunch of mucous before removing the tube, but a lot remained.  As a daddy, I was concerned about the stress on a newly rebuilt heart.  I watched his heartrate shoot up to 140+ from 100 and blood pressure got high as well.  Like rebuilding a motor and immediately taking it to the racetrack for full-speed runs.  It works, or it don't.  Cannon's heart did fine.  After much crying, this time with sound, a couple of muted screams, he finally just wore himself out and fell asleep.  He finally got the idea that the moving was causing the pain, and sitting still helped.  He's still full of needles, tubes, wires, all covered in tape that pulls against your skin when you move.

So the tube's out, and the next challenge is to get him to last 4 hours without anything to drink.  Knowing that he was dying of thirst before the tube came out, we knew this would be a tough four hours.  Nothing a little prayer couldn't solve.  Once he calmed down, he fell asleep.  He would wake periodically and watch TV, then fall back asleep.  The next thing we knew, four hours had passed and he never asked for a drink!  He got an X-ray, they saw no issues, and allowed him to take in fluids for the first time.  His throat hadn't seen moisture since Friday, so he really enjoyed that first drink.  He was rationed to 1 oz per hour.  Tori warned him that was all he'd get, so he decided to drink half and save the rest for later.  He's 6.  I'm 36.  He's tougher than I am.  Sad.

Through the afternoon, he progressively became more agitated, to the point at 7 PM when we got a new nurse, she immediately decided to give morphine.  He wasn't in great pain, he just kept saying he was uncomfortable.  I wonder why.  You've got a 8-inch scar on your chest, 3 wires coming out through your skin, 2 quarter-inch tubes coming out of your belly, more tubes in not-so-comfy places, stickers grabbing your skin all over, and your innards have all been handled, and you're a pincushion for needles.  Where's the discomfort in that?  Once the morphine kicked in, weeeee weeeeere allllllll goooooooooddd!!!  Now it was all about "I want to see Aspen" or "I have to poop like for 80 days", and so on.

We didn't discuss surgery much, but I asked him how long he'd been in the hospital.  He said he didn't know.  I asked him if he remembered waking up this morning.  He didn't.  I asked him when his surgery was.  He said yesterday.  Surgery was Friday, today is Monday... SUCCESS!  He remembers nothing of the worst parts of this journey.  He'll just have to read about it one day.

After a few hours it's about 9 PM and the morphine is wearing off.  I've been working on this particular post on/off for most of the afternoon, between trips up to see Cannon.  I'm about to head back up, and I hope he's close to another shot of morphine!  That's a blast to watch ;-)

Recovery: Day 2 (PM)

Today turned into a waiting game for Cannon.  They removed the heavy sedative from his regimen, which left him with a light sedative and a painkiller.  So for the entire day we had the priviledge of interacting with Cannon quite  a bit since he wasn't so drugged up.  He still had his eyes closed most of the time, but he opened his eyes when we called his name, and answered yes/no questions with a shake or nod.  When he had problems and needed something, we told him to ask in a word or two and we would read his lips.  This worked pretty well, we had some wins and losses here.

One reminder I'll put in here for myself: everyone is exhausted, everyone wants the best for Cannon, and everyone has a different idea of what's best.  One good idea is for everyone to communicate together a general plan for how to deal with the patient.  After 48 hours from surgery, I think we've found Cannon needs less stimulus.  Everyone wants to provide the absolute best care for him and meet every single need.  But he can't communicate.  So this leads to a littany of questions from everyone; and they are just trying to find out what they need to do to help.  I think this proved to be detrimental to Cannon's mental health, he became quite frustrated tonight and shut down a bit because every time his eyes opened he was being required to answer yes/no questions or respond in some way.  If I was the patient, I'd be mad too.  It has to be up to the folks that know the patient best to make this call.

Cannon's numbers are all looking good.  His ventilator was put in a "test" mode today that requires Cannon to do all the breathing, with the ventilator as backup.  This test was done last night and didn't go so hot.  We did it again today at 4 and he did better.  He did forget to breath for a while there and made the ventilator do some alarming, but he was told to take a deep breath.  He did and everything got back on track.  During the test his blood is drawn to see how his body is handling doing all the work, and all those tests came back good.  We'll have to do this again at 2 AM, if that goes well we may be ready for the next step.

The atrial line is a sensor that goes directly into the heart and measures the pressure within.  The next step is to remove this line.  This is a risky, but standard, procedure.  The line is simply pulled out of the heart (as I understand it).  As it comes through the wall of the heart, there's potential for internal bleeding from the heart to the chest cavity.  However, there's chest tubes to remove the excess blood from around the heart, and there will be blood available during the procedure to transfuse if necessary.

Once the atrial line comes out, if there's no leakage the chest tubes can come out since there won't be any more fluids to drain from the chest cavity.  THEN the breathing tube can come out and Cannon can start to think about talking/eating/drinking.  That'll be one fine day!!!  Cannon is sick of his prison.

Recovery: Day 2 (AM)

This morning, we came in to find Cannon had progressed right along in the past 5 hours or so.  His heartrate was down to 100 and the pacemaker was off.  His fever is gone, blood pressure is up where we want it.  One issue is the pressures in his atria, they are both still high at 15.  We want 8-10.  His lactates are perfect at 1.3 and no longer an item of concern.

Of more importance last night was the breathing machine.  They knocked the machine down to 12 breaths per minute (from 16), and Cannon has been going at just under 20.  This means he's taking more breaths on his own.  They aren't good breaths yet, but improving.  Docs aren't sure yet if the tube will come out today or not.  They want to take the machine from 12 down to 0 to see if Cannon will breathe on his own.  They'll leave the machine on, but it will only breathe if he needs help breathing.  The rate will be up to him.  In addition to this, a few other things have to take place before the tube can be removed... I call these "prophecy".  Until prophecy is fullfilled, there will be no removal of the tube.  And as long as the tube is in, Cannon will be sedated.  But as we've learned previously, that's doesn't mean he doesn't hear!

Prayer requests:
1) There's a number of tubes passing in/out of Cannon's body.  Large risk of infection, please pray for protection against infection.
2) The breathing tube may come out today, appreciate your prayers for doctors' wisdom in making this call at the right time.
3) Cannon is going to be un-sedated before the tube can come out, he's going to experience a lot of pain.  Please pray for his patience in dealing with the pain and discomfort.  And we all know how hard it is to watch your loved ones experience pain, please pray for the family as well.

Thank you all for your prayers!

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.

Update #6: 3:45 PM

Things are progressing well.  The baffle is pretty much complete and the they are beginning to close up the heart.  The main deal here is to get all air out of the heart, there can't be any air bubbles at all or we'll have major issues.  Then they'll install that last conduit that connects the heart to the lungs, this effectively closes the heart system and they'll be able to re-introduce blood to the heart and kick-start that thing, so long as there's no leaks.  Once they do that, if his heart establishes its own good rhythm they'll just close him up.  If it doesn't establish its own rhythm, they'll put in a pacemaker to do it for him.

In our last meeting with Jennifer, we asked what we'd see in the ICU.  Cannon will just have a white bandage over the incision (under that are butterfly bandages holding the skin closed and stainless cables are holding the breastbone together).  But he'll have a chest tube that will allow the chest cavity to drain, as well as the standard catheters, IVs, breathing tube, etc... Don't expect him to be swelled up until tomorrow, so he may still look a little like our son.

They'll keep him sedated tonight while we ride the roller coaster of blood pressure and heart rate swings.  This is normal, but had they  not warned us I'm sure our adrenaline would kick in the first time his blood pressure or heart rate dropped.  Who am I kidding, the adrenaline is gonna kick in anyway.  We hope that they'll get to wake him up tomorrow, that will depend on whether or not his BP stablilizes (and I'm sure at least 100 other parameters are met).

We hope the next update is at 5, given by Dr. Fraser himself!

Update #5: 2:15 PM

We have a pager that looks like one of the disks you get at a Texas Roadhouse while you wait for your table.  When that pager goes off, that means it's time to go to the receptionist desk to find out what consultation room to go into.  Once in our consultation room, we have a couple minutes to wait until Jennifer comes in.  Jennifer is the Nurse Practitioner for Dr. Fraser, and the messenger that delivers these updates from the OR (this was our 5th update).  When we go into the consultation room, we don't know what news is about to hit us.  Could be good, could be bad.  We'll be sitting on the couch in the consultation room waiting, the door will open and the first thing we look for is "Is Jennifer smiling or not?!"  She's very good at what she does.  Because she's always smiling, and before she turns around and closes the door she says "Cannon is doing fine!" 

This last update was no different.  Dr. Fraser is currently installing the baffle that will re-route the blood from the ventricles to the correct atria.  So at this point they've fixed the VSD and the CCTGA.  Once these are complete, he'll "back out" of the interior of the heart and connect the exterior conduit that will route blood over to the lungs.  Then they'll re-establish blood flow and start the heart back up.  As I write this at 3:26, his heart has been idle for almost 4 and a half hours.  After rebuilding the motor, the trick is always turning the key and letting the motor run for the first time!!

We're finding that these almost hourly updates really break the day up and make it go fast. Rather than sitting in the waiting room for 12 hours wondering what's going on, we feel we always know what's going on and only have to wait for the next update.


The OR is on the 18th floor.  Know why they put the OR so high up?  Makes our prayers to God a local call.
     - Byron Reeves

Update #4: 12:15 PM

Dr. Fraser is currently patching the hole between the ventricles.  This solves the Ventricular Septal Defect (VSD).  The conduit for the Pulmonary Stenosis (PS) is being made while he does this, and will be added next.  All vitals are looking good.

I hope Dr. Fraser stops for lunch.  Everybody should take breaks.  Cannon's not going anywhere.

Update #3: 11:15 AM

Here's a strange thought: from where I'm sitting in a waiting room, about 150' away in another room my son is lying on a table with his heart stopped.  People are poking, prodding, and handling his heart.  The idea that he could come out of this alive is hard to believe.  The technology we take for granted on a daily basis is astounding... miracles happen here every day.

And Tori and I are just one set of parents going through this.  Countless parents have come before us and will come after.  In the same waiting room is a family who's 3-year-old has had 8 cath procedures and an open-heart surgery.  He's currently recovering from his latest cath procedure.  I didn't think we had it easy, but in some respects we do.  The family behind me just learned their little girl's heart's pressures are normal and her heart has shrunk down to a normal size thanks to prayer and medications.  She gets to go home today and they are praising God.  I love when he answers prayer!

At this point, Cannon has been on the heart-lung machine for about a half hour (he went on about 11).  He'll have an 18mm "Hancock Valve" installed as part of this procedure, we just received a card that describes this gizmo.  It seems to be a pig valve with some stainless steel modifications.  I don't know why we need this card, but maybe if the over-zealous guard at the airport is giving us a hard time because the machine beeps every time Cannon walks through we'll have an excuse.  We'll see....

All Cannon's vitals are looking fine.  Jennifer is Dr. Fraser's nurse practictioner... she says Cannon is doing his job well!

Update #2: 9:30 AM

The transesophageal echo looked fine, so they proceeded to open his chest up.  They've gotten through the breastbone and are currently sorting through the vessels, tissues, and other 'biological stuff' that this electronics guy has no clue about.  They'll be going through everything they can see and make sure all is in the right place, and do as much work as possible before putting him on the bypass machine.  That's a big event where his blood is routed into a machine that will oxygenate his blood for him (they've already put a tube in to breathe for him), then his heart will be stopped so the surgeons can work on it while it's still and dry (no blood).  Nothing to worry about there.

Right.

Update #1: 8 AM

Cannon is officially under anesthesia.
Arterial lines are in, this will facilitate the input of massive doses of drugs throughout the surgery.
They are prepping for a [watch this] transesophageal echocardiogram.  This is where they put a probe down his esophagus to get a close-up echo of the heart... it's the closest thing they got to taking a picture of the heart from the inside before making the decision to open him up.  They'll make sure the heart looks exactly as they expect from all angles, then proceed with popping the hood and rebuilding the motor.  We'll get another update at 9:30.

We are GO for launch!

Thank you to everyone for your prayers!  Our little event has officially begun, Cannon is now in the OR.

This morning went pretty good.  Cannon was scared last night and joined us in bed, but was able to sleep well.  That's a good thing cuz we let him stay up late last night playing in the hotel pool and getting as much play time in as possible; we knew it'd be his last for a month or so.  He got up scared this morning, which opened up a quick lesson on courage: pushing through your tasks even when you're scared.  He did just that.

We had great family time in the waiting room on 17 this morning, everyone got to be together for a time while we waited for 6 AM to come around, then 6:15, then 6:20.  Made us wonder after our last attempt when time ticked by and nothing was happening!  But at 6:30 we were called up to 18 for prep.  As usual, Cannon had a terrible time taking the sedation med.  It has a horrible metallic taste we're told, it makes him puke.  Which he did.  At that point, we told Cannon we'd have to try again.  That's a good lesson in how to make a crying kid cry harder!  We discussed the option of getting thelmeds via an injection, which was a little more favorable than the option of drinking it.  He got the shot, we said our Goodbye's and I love you's, and he was out.  When they wheeled him to the OR, his eyes were open but you could tell no one was home.  It's hard to see, but we're glad he won't remember any of that at all.  The last thing he'll remember is being sandwiched by mommy and daddy.

I'll admit, this is hard.  Everything's been comfortable for 6 years, there's been little risk for the last 5 or so.  If you looked at Cannon yesterday and watched him play and swim in the pool... if you didn't know any better you'd think he was a perfectly normal and healthy kid.  I'm finding it hard to send him in for a major open-heart surgery when on the outside it seems there's nothing wrong with him.  He seems normal and life is comfortable.  But I have to remind myself of the options: no surgery and enjoy him for an unknown amount of time (10 years?  20 years?  40?).  Or do something now, and hopefully we beat him to heaven!  I know that sounds a little harsh, but these are the decisions we're dealing with.

God's done good preparing us, but that don't mean it don't hurt.  We're surrounded by the best possible support team of family and friends.  Speaking of which, anyone's invited to come visit us on 17 in TCH's West Tower.  Between Tori and I, we'll do our best to keep everyone updated throughout the day while we document the stages and get new news (we'll get hourly updates from the OR).  See you soon!