Friday, September 30, 2011


So it was a very long night...

I had hoped that it would be a long peaceful night since the plan while Caelan was intubated was to keep him sedated.  Well, Caelan has a very good memory when it comes to narcotics and having just been on a whack of them for a week, he was more than prepared to start back where he left off.  His infusions were set up at a minimal rate and they were hoping that with the addition of some nice sleepy time drugs they could keep him fairly settled.  If not, there were those boluses, or extras, that he could get once an hour.  I don't think once, all night, did we go that full hour without having to top him up with something.  By early this morning we were knocking him with everything we had to give him and then paging doctors for the okay to give him more.  At once point it took three times the prescribed bolus to keep him on the bed!  Remember that's in addition to a bunch of sleepy drugs too.  Caelan wanted that intubation tube out.  Nobody can say that boy is anything but committed to what he wants.  We managed to hold him off until 8 o'clock this morning.  I guess he'd overheard the plan for a "first thing in the morning" extubation.  We herded the team together and as easy as that the tube was out.

It was my hope that once the tube came out, Caelan would breathe a huge sigh of relief, say "wow, does that ever feel better" and we'd be on our way.

Unfortunately, it didn't quite go down like that.

He did have a huge sigh of relief.  He looked great.  He sounded FULL of gunk.  He was still pretty dopey, despite not having enough sedation to keep him completely settled, he was far from alert.  I spent the next couple of hours changing his position and trying to get him to cough some of that gunk out.  This entire time he had no difficulty breathing and showed no sign of distress.  Physiotherapy came by to do some chest therapy and we ended up suctioning out tons of gunk.  This however, did exhaust Caelan and resulted in some more laboured breathing.  Bring back the c-pap, the b-pap, the epi's...  ugh.

What does this all mean?  I don't know.

It could mean that he should go back into the operating room and they should remove a little bit more.  It could also simply mean that the surgical site is still slightly inflamed and needs some time to heal.  It could mean that we just have to wait for more of those sedatives to get out of his system.

Full of questions once again... or is it still?

That's where we're at headed into another weekend... again.

shot down

So Ry's off to a sleepover tonight and Darcy's plans for the same were never finalized.

I thought this would be a perfect opportunity for a mother-daughter date.

I looked up movie times, but was willing to leave the plan to her.  We could make one of her faves, eat out or get take out.  We could go to the movies or rent one.  We could play games, go bowling, go shopping, ... The possibilities were endless.

I leave the hospital to go pick her up at school.  I surprise her in the school yard and ask her for a date night.

She shoots me down.  She didn't even take two seconds to think about it.  Flat out no.

She doesn't even want a drive home.  She'd rather take the bus with her friends.

I'm hurt.  I'm sad.  I'm frustrated.  But I understand.

When she does get home she's quick to tell me that plans have been made and a sleepover is allowed.  It's all just the matter of a telephone call to finalize the details.  And so it is done. 

These girls better want to sleep tonight because this momma sure does!!

Thursday, September 29, 2011

he's out

Everything looks good and we're told it went great.

They actually ended up doing something different than what they planned on doing.  He went in for a cordotomy and ended up having more of a superglautoplasty (?? or something that sounds kinda like that).  Apparently it's something they do quite routinely.  We're hopeful that this will be it, but there's always that possibility that they'll have to go back in again.  We just have to wait and see.

So everyone's frantically getting infusions ready to keep Caelan sedated until the planned extubation tomorrow morning.  If they don't work fast enough they (and we) are going to have one crazed little boy flying off the bed in his usual post op manner!  I can never understand why these things aren't prepped while he's in surgery!?!?

Note: I've confirmed it's called a supraglottoplasty - I was pretty close, eh??

waiting, waiting, waiting...

Should only have to wait about two hours this morning.
This procedure is considered a quick one.

They suspected that getting the IV would be the longest part.
We thought they were probably right.

They were quick to come and brag that they got the IV easy peasy!
Funny the things that make you smile when your kid is in surgery...

Wednesday, September 28, 2011

big days

So, our boy is back!

Smiles and giggles a plenty.  It's so nice to see him more like himself.

We're still in the I.C.U.  I don't think they know what to do with us.  For the most part Caelan is doing great.  We're playing on a mat on the floor of his room for most of the day.  Caelan is tolerating being off his c-pap for hours at a time.  If we weren't at the hospital, life would be grand.  But he does still get upset.  Yesterday they wanted a blood test and it took seven pokes over a few hours to get what they needed.  That was enough to piss him off enough to need his c-pap back.  Heck, at that point I was ready for one of his sedatives too!  So even though his good times are getting longer, the bad times are still just as bad and he's unable to catch his breath.

Therefore, Caelan is headed back into the operating room tomorrow morning for a cordotomy.  They'll be shaving about a millimeter off one of the vocal cords.  Doesn't sound like much but when you're talking about the radius through which you breath every little bit counts.  The procedure will be done with a laser and Caelan will be intubated for 24 hours, after which hopefully his recovery will be fast.

Tuesday, September 27, 2011

reading with Dad

Trying to keep Caelan awake, alert and calm during the days.  We're watching lots of movies, blowing bubbles, having tea parties and reading stories.  We also spend a lot of time playing in water.  He was very 'floppy moppy' the first few days he was awake, with very little strength.  He couldn't hold his head up or sit unassisted.  Now, he's better at holding his head straight but still needs assistance sitting.  Every day things get a bit better so that's good.

This expression is one of the first of 'our Caelan' that I've seen.

Still pretty spaced out, but every day there's a bit more 'Caelan'.

Note:  Yesterday (Monday) was the first day that I got a smile and a laugh!!  It was a small smile, but a smile all the same.  And despite all the tickling and silliness I have yet to get another of either out of him!!  What made him laugh you might ask?  Well he put a cup on his nose - apparently that's deep belly laugh worthy!

Monday, September 26, 2011

rub a dub

"When I signed that I wanted a bath, this isn't what I had in mind..."

a break

We've been taking Caelan off the c-pap for some short trials.  He's been doing really well... Actually he kind of reminds me of that nursery rhyme...

There was a little girl,
who had a little curl.
Right in the middle of her forehead;
When she was good,
she was very, very good,
and when she was bad she was horrid.

Yep. That's Caelan. 

Well, except he's a boy.

He does GREAT off the c-pap, but...
and it's a BIG BUT...

If he gets upset he just can't catch his breath.  He becomes increasingly indrawn and has to work extremely hard to breath.  It's unsettling to watch.  It also takes him quite a while to recover from these 'episodes'.   We're hoping that over time he'll get stronger and more comfortable with this new breathing thing and be able to manage these fits better.  The alternative, if he doesn't, is to head back into the operating room and widen the opening of his vocal cords.  It's a wait and see what Caelan does.

It's taking quite a while to get the narcotics and sedatives out of Caelan's system.  Which might be part of the problem.  Were hoping that the more he wakes up the better things will go.  He's still very dopey.

As much as Caelan has his eyes open during more of the day, there's still very little of 'our Caelan' shining through.  He's what you'd call expression-less.  No reactions to anything.  It's just a flat face, no smiles, no cheeky grins, nothing.  Disturbing really for such a happy boy.
(Note:  You can see the imprint on his cheeks from his c-pap mask.  We're trying one that is supposed to only cover his nose, but often slips over his upper lip too.  The patches are duoderm (?) -they're padded plasters that protect his skin from the masks.)

Check out that bare neck!!  I still can't get over it...

Sunday, September 25, 2011

bi-pap, c-pap, all crap

This picture is from one of Caelan's first days post extubation on bi-pap.  How can that mask be remotely comfortable?  I understand that it's needed, but there must be someone out there that can create something a little more comfortable.   Unfortunately, it's the same system and mask when Caelan switched from bi-pap to c-pap.  Even worse is that there really is no mask that fits Caelan's face properly.  This full face style is a little too long and hangs low on his chins so we're constantly having to adjust it to try and keep a seal.  We have had to tighten the straps so much that it's rubbing his skin raw in certain areas.  He's tried on every single style and size of mask in the hospital.  Apparently there's a huge gap in manufacturing masks for his age group.  When it comes to c-pap most emphasis and money is spent on adult systems, not children.  So if you want to get rich, here's my suggestion to you:  create a bi-pap/c-pap mask that fits a toddler!

Thursday, September 22, 2011


That's the number of days we've been in the P.I.C.U.

Two whole weeks.

Without seeing Caelan smile.

Fourteen days is a long time.

It's really starting to feel like it.

This is the worst vacation I've ever taken from work.

No question about it.

The girls are getting tired of this routine.

Heck, Damian and I are getting tired of it too.

Tired parents and tired kids does not a happy family make.

We just want our family together under one roof.



We're just doing the best we can.

And so is Caelan.

One day at a time.

Wednesday, September 21, 2011

he's coming back

Caelan has been awake all morning.

Awake and calm. 
Alert and wiggling. 
Woo hoo!!

Trying to rip his cpap mask off.
Trying to take off his oxygen probe.
Go for it Caelan!

No smiles yet but a few signs.
I'll take it!

He smells so much fresher after a much needed bath.  He also succeeded at holding his own with just a blow by of oxygen while we washed his face and cleaned up his mouth.  We've since lowered the pressures on his cpap and he's doing well.

Such a good morning.

He even tolerated his scope this morning - ok that might be a bit of a stretch, but he recovered well.  The scope showed a bit narrower opening than they would have liked but because Caelan's been improving daily they're going to stand by the wait and see approach.

About time we had a good morning.  Here's hoping they keep coming.

Tuesday, September 20, 2011

balancing acts

Caelan is still having some difficulty breathing when he gets upset.  The more he gets worked up the harder he has to work to breath.  It's not easy to see, especially when we expected to come away from this surgery without any breathing concerns.  Apparently it's normal for Caelan to have an adjustment period to get used to this new method of breathing.  I think we've gone a step past normal though.  Tomorrow they'll be doing what they call a soft scope.  It's similar to a bronchoscopy but it's a flexible camera that's inserted down his nasal passage.  (It's about the size of a piece of spaghetti.)  Not pleasant.  They're hoping to determine if there's any scar tissue that's narrowed Caelan's upper airway and would explain the difficulty he's been having.

It's all just such a balancing act.  We really don't know what's what!?  Is he overly sedated?  Are these symptoms of withdrawal?  Is he in pain or discomfort?  Does he need to have secretions suctioned?  Trying to balance out medications to ensure that he's alert enough to grasp this whole new way of breathing and learn how to cough and clear his secretions in a new way (not out of a trach), but at the same time keeping him calm and comfortable.  The more he cries, the more secretions he makes, the more suctioning he needs, the more he gets worked up, the harder it is for him to catch his breath.  It's a vicious cycle.  When he cries, is it because he's uncomfortable? in pain? scared? withdrawal-ing?  I love how the hospital staff looks at us and asks our opinion and we haven't got a clue.  Seriously I am glad they ask us since we like to have a say in our son's care, but at the same time when you don't know, you really wish someone else could tell you what the right answer is!  The only person who can do that is Caelan and he doesn't seem to want to part with that information.

A urine sample that they took last week grew some bacteria.  They've taken another sample by catheter to confirm the results but in the mean time Caelan's on antibiotics for a suspected urinary tract infection.  This is despite not having any other symptoms than the fever that he had that first week post op and a very slightly elevated white blood cell count one day.

What else can I update on... Still no IV, which means no big bloodwork. 

Oh, we've taken another step in the right direction changing Caelan's bi-pap to c-pap.  It's a different method of helping Caelan with his breathing.  He isn't getting any oxygen support - except post suctioning to help him recover faster.  He's on what's considered room air.  We were hoping to be able to give him some time off on his own but we're not quite there yet.

We tried to increase the rate of his feed again yesterday.  The dietician felt confident that he'd handle jumping from 45 ml/hour to 70 ml/hour.  I bumped him back to 55ml/hour in the middle of the night when he started crying out in his sleep.  I really think this breathing thing should be our focus right now, not a feeding schedule similar to what we previously had at home.  We can figure that out later - not my priority or concern at the moment.  Today it was agreed that we'd try him at 60 ml/hour.  Slow and steady.

After what we felt was a rather traumatic weekend I'm happy to say that we feel we're at least looking in the right direction.  After many sleepless nights at the hospital, Damian and I are back into our passing ships routine, trading off nights with Caelan at CHEO or at home with the girls.

Sunday, September 18, 2011


Apparently all we needed to do was to threaten Caelan with reintubation and he smartened himself right up.

Well it wasn't quite that easy, but we managed to get away without intubation.  I am so happy about this.  I know that we aren't out of the woods but at least I feel like we're facing the right direction again!

Yesterday was awful.  In the middle of the night Caelan lost his IV.  This was after two days of trying to get one because we knew we were losing this one.  Well, the nurses on Friday night were able to get another one after we lost it but unfortunately it went interstitial ( I think that's what they call it!).  It means that the saline solution he was getting was being pumped into the tissue in Caelan's arm, not the vein.  It makes his arm extremely tender, swollen and hard.  This meant no extra doses of morphine or versed because we had no IV.  It also meant that his first night in addition to a very sore throat he also had a very painful arm.

In the morning, Caelan seemed to get more and more restless.  We were unable to settle him after a vigorous round of suctioning gunk out of his throat.  He couldn't catch his breath.  His breathing was becoming more and more labourous.  It was at that point that the Doctor said she thought we should call ENT.  Our surgeon had requested more notice rather than less if they felt that intubation was going to be necessary.  We'd rather not have to do an emergency intubation, under control goes much smoother.  The Doctor felt we were at that point and called ENT and anasthesiology to make the necessary steps.

In the interim, while I roamed the halls of CHEO in tears, Damian snuggled Caelan into the most peaceful state.  It was a long snuggle that left Daddy with no feeling in his arms or legs, but so worth it, beacuse when the anasthesiologist arrived and looked at Caelan he saw no need to intubate.  Several phone calls later, and some lenthy discussions and it was agreed that we'd hold off as long as Caelan remained calm.

Although the decision was made to not intubate there was still a lot of concern about not having an IV.  No IV meant no effective way of sedating Caelan quickly if intubation was required.  Damian and I were extremely doubtful and weren't too happy about more pricks and pokes on our boy who was already covered in bruises.  Three days worth of a mulititude of nurses attempting to get IVs with no success didn't give us much hope.  We were extremely reluctant.  We relented because anasthesiology was going to use ultrasound to locate the veins.  It was quite clear that the most obvious, and even not so obvious veins were already shot.  Unfortunately even with the ultrasound there were only two slim options for anasthesiology to use, and once again there was no success.  I think the Team here has finally accepted the fact that there are no more veins on our boy that are of any use to them. 

So our mission now is to keep Caelan calm and NOT intubated.  If that means being a little more sleepy than we had anticipated so be it.  Rest well my boy, grow strong and figure this whole new way of breathing out... then show them what you're made of!!

Saturday, September 17, 2011



Looks like Caelan is headed back to the operating room to be reintubated.

Friday, September 16, 2011

true Caelan fashion...


Caelan doesn't like to do anything the easy way.

He did come back from the operating room without the breathing tube... However it hasn't been smooth sailing.  He's a little uncoordinated in his breathing and is requiring some bi-pap (like c-pap) to help him out a little.  The surgeon explained that while he was trached he had an easy effortless system for breathing, now he's trying to breath through vocal cords that have been pinned open.  It's not as easy as what he's used to.  It's different and he just has to figure it all out.  He's full of gunk (secretions) that he's coughing up, he's gone through a few rounds of chest therapy to help loosen it and get it out of his chest and lungs.  Hard to breath through a bunch of slime.  He's got some serious stridor going on which is reminiscent of our NICU days before Caelan was trached.  It's a little hard to hear (and see) and not be brought back in time.  It quiets right down while he's asleep and seems to be at it's worst when he's upset and crying.

When Caelan came back from the operating room they stopped all his infusions of fentanyl and midazolam.  Time to wake up Caelan!  He's not sure he's ready for that yet.  It takes a lot of effort to try and open an eye - the eyebrows go up but only enough that he can peak through a tiny slit.  Still lots of drugs in his system.  He's more aware of his surroundings and getting wiggly as he kind of wakes up for brief moments.  He's also getting jittery as his body realizes that there's no more happy drugs being delivered.  The first signs of withdrawal.

Right now we're so thrilled to see our boy without his trache or breathing tube.  I took great pleasure washing all around his neck during his sponge bath.

Caelan still needs to prove that he doesn't need to be re-intubated.

We realize we're not out of the woods yet. 

I feel like I'm still holding my breath, and am constantly reminding myself to just breathe...

holding my breath

Caelan is in the operating room right now having his bronchoscopy.  That's the scope to check how everything is healing.  If all goes well he'll come out with no breathing tubes.  We're keeping our fingers crossed.  The anticipation is nerve wracking... I think if I bit my nails, I'd be down to the cuticles!

Thursday, September 15, 2011

back up measures

So when the above meds don't keep Caelan sleepy enough...

We have braces on Caelan's arms so he can't bend them at the elbow.  This prevents him from pulling his intubation tube out. 

Not even a full 24 hours left to go. 

Tomorrow morning Caelan is scheduled for another bronch to check and make sure all is healing well and then the plan is to extubate.  In preparation for this, Caelan has been receiving some anti inflammatory medication.  As well, because the morphine was starting to impact his kidney, it's been switched to fentanyl.  The vent has been turned down again so he's breathing more and more on his own.  They've also allowed a little fidgeting and squirming today since they want him more awake before going in for the bronch.

Wednesday, September 14, 2011

Dream world Momma

ok so I have a confession...

Before Caelan was admitted I falsely believed that once Caelan was sedated post op we'd be sailing.  He should be in the most pain immediately after surgery, so I had rationalized that once we had him comfortable we just had to maintain that for the week.  I even believed that if all went really well I might even go to work on Monday and Tuesday of this week while our boy slept soundly and peacefully in the hospital. 

HA HA  HA!!  What planet was I dreaming on?!!?  How soon I forget how things work!

I know this too - that's what made it so embarassing when I realized just how naive I was being.  When you are sedated post op, generally that's the least amount of drugs you'll need.  As time passes your body becomes accustomed to the drugs and you develop a tolerance to them.  Each day you require more and more medication to keep you at the same comfort level.  It's a constant game of catch up.  With Caelan even more so.  His body is already familiar with these medications and he just eats them right up so to speak. 

Caelan's medications have been increased regularly over the past few days in the PICU.  I mentionned in an earlier post that Caelan hasn't required as many of the extra boosts of morphine and medazolam, but you have to understand that they have increased the infusions.  The infusions are the medications that he gets continuously through his IV.  He's still getting more, but it seems likes less when they don't have to give all those extra boosts.

With all that said, there have been no increases to any of his narcotics the past two days.  Not sure I can say the same for the next two though...

Tuesday, September 13, 2011

update the update

grrr... The bronchoscopy has been postponed.
Everything will happen on Friday now.
I know it's only two days...
Really, what's a couple more days? 
Especially in the grand scheme of things.
I'll tell you what though - it's two extra days of Caelan getting more and more narcotics in his system...
Thats never a good thing.
Two more days of healing has to be good though, right?
So, two more sleepy days my boy...

Time for an update

I apologize for not being too great on keeping up communications while Caelan's in the hospital but it's hard to find the time, and quite honestly when you do get time you choose to sleep!

Unfortunately Caelan wasn't quite on board the "boring" plan of just sleeping, resting and staying calm.  No sooner had I entered that last post that Mr. C started being a real turkey.

There's this thing in the hospital called 'the bowel movement protocol'.  On Sunday, Caelan was three days post op without having pooped despite the numerous medications that they give to help this along.  This meant that he got this little extra something-something to get things moving and without going into too much detail, it worked.  However in working it also broke Caelan's calm, restful state.  Caelan's heart rate started to climb steadily and his oxygen saturations were dipping lower and lower.  He'd received all the meds available to him and nothing seemed to calm him back down.  Took all afternoon and some of the evening before things started getting back to normal.  Eventually, he settled but it took a long time and quite honestly it had Momma pretty nervous.  He's no longer only getting 25% oxygen, it's now more like 45% but at least he's saturating more mid-high 90s and his heart rate is beautiful!!

Yesterday he did pretty well following the boring plan until shortly after shift change when he blew his IV.  As frustrating as it is, he did much better on this count than Damian and I had thought since this was still his surgery IV, so a full four days.  It took two nurses and four attempts but they managed to get a new IV without Caelan getting upset about it all.  I was impressed because no IV means no steady infusion of morphine or midazolam and yet Caelan remained completely calm the entire time.  So proud of him, he's really embracing his chloral hydrate and sleeping his week away.

They've introduced clonidine, which is is a pain reliever but not a narcotic so it helps with the withdrawal. Caelan had this in the NICU too so we're familiar with it.  For the last two days he hasn't needed any extra boosts of morphine or midazolam, just the infusion, the chloral hydrate and the clonidine. He's finished his antibiotic, and although he's still low grade fever his white blood cell count is still not elevated.  Phew!

In fact, we got news today that tomorrow is the BIG day.  Caelan will be heading back into the operating room for another bronchoscopy and potential extubation.... SO EXCITING!!

Then we're on to the wild and crazy times... withdrawal. 
I would be so happy to be wrong about this next step...

Sunday, September 11, 2011

good nights sleep

Well we took the big step last night and both, Damian and I slept at home.

And Caelan was fine.  He did great.  His heart rate showed he was resting comfortably.

Yesterday ENT came in and changed the dressings so he looks better too!  That boy sure is going to have some stories to tell... He's got a road map of scars all over his torso.  Damian figures he could pull off stories of a past full of wrestlig crocodiles or knife fighting...

I know all the tubes can seem overwhelming but really it's not that much.  Kinda sad that I feel that way, eh?  It's scary how this is just all to familiar and comfortable.  How easily we settle into this old CHEO routine... 

Caelan will remain intubated, which is the tube in his nose, until at least Wednesday.  This gives him oxygen when he needs it.  He was on 100% initially post op but has been down to 25% and still sating in the 90s so that's good.  This is monitored through a sat probe that is currently on his toe but gets rotated between thumbs, fingers and toes regularly. The intubation tube is also helping hold the vocal cords apart to let them heal properly. 

He still has his g-tube feed and has been back on his Pepatmen Junior since Thursday.  There was some thought given to playing with his feeds but it's been decided to just keep him on a nice slow continuous rate for a while yet.  The Dietician was in to see him and was ambitious to start bolus feeds and incresing the rate by which he gets his feed.  Caelan didn't agree with this plan (for the record I'm not convinced that Mom or Dad were all for it either!)  so were back to continuous for now.  Slow and steady.

His IV is in his right arm and he's still on a continuous infusion of morphiine and versed (midazolam).  His blood work came back high in sodium so the saline solution has been dropped and a more appropriate solution is being run with these.  There are also concerns about his levels of creatnine and urea, as usual... these are measured to verify the functioning of Caelan's kidney, which we know is never great to begin with.  The good news is that they came down slightly from yesterday to today, so we hope that trend continues.

He also has three probes that are stuck to his chest to monitor his heart and respirations.  As well there's a blood pressure cuff that gets rotated between arms and legs taking continuous readings.  His blood pressure is monitored very closely, especially because he has regularly had what's called a 'wide reading'.  His solitary kidney may be having a hard time keeping up with all this stuff and is being watched very closely.

Yesterday morning there were some concerns about an elevated heart rate and we were concerned about some underlying pain but overnight he was in the 110s and today the 120s so all is well and the boy is resting comfortably.

The slight temperature that they were concerned with has been resolved with a fan.  Our boy runs hot.  We're all in there with our hoodies and huddled in blankets while he's lazing about in his diaper with no need for a blanket!  The bloodwork they did showed no signs of an elevated white blood cell count so no big concerns about infection.

We have the same nurse on tonight so if the boy remains calm and boring all day we'll probably both head home for another good nights sleep.  Well as good as they can get when your baby boy isn't sleeping under the same roof. 

Bring on the boring Caelan!!!  Only a few more days and then we'll get all wild and crazy, okay?

Saturday, September 10, 2011

post op

LOVE this plan, let's hope Caelan does too!

Look at that neck! xoxoxo

Friday, September 9, 2011


Caelan was in a great mood before surgery!  Especially considering we woke him up by putting him in the van before six in the morning.  He was actually quite excited once he was awake.  Both Damian and I had the same thought; the last time we loaded him into the van from a dead sleep was when we headed off to Florida.  Sorry Buddy, our destination isn't nearly as fun this time around!  He asked about the girls repeatedly on the way there and would laugh when we told them they were still sleeping at home!  I think he might have thought he was getting away with something... 

Once at the hospital he was right at home in the day-care surgery playroom.  I guess being there just last week worked in our favour.  He knew where the toys were stashed and he knew what he wanted to play.  He was a busy little bee in that room, chatting up a storm and entertaining all the other patients with his antics.

It was only in the pre assessment room that the infamous bottom lip came out.  I guess getting your temperature taken is the tip off, who knew?  But once we were out of there and getting him into his striped jammies he was all smiles once again.  Usually there's more time to play (aka wait) before being escorted to surgery but we were ushered right over. 

Caelan and Mommy in our yellows

Daddy and Caelan blowing bubbles

We only had a few moments together before Mommy got suited up and carried Caelan into the operating room.  You could see the apprehension on his face as I suited up.  The nurse saw it too and quickly fetched the bubbles to distract him.  It worked fabulously and Caelan stayed all smiles.

maybe a little apprehensive
 Even right outside the OR he was giggling when I asked him where my nose went after pulling up my face mask.  He did so well.  The best ever.  I really thought that he would remember the trip to the OR from last week and that it wouldn't go well, but it was the exact opposite.  It was like he remembered and knew everything would turn out alright.

Sweet dreams my boy

ok so the plan for the next seven days is for Caelan to stay asleep.  He needs to be comfortable and resting.  This means he needs to be drugged, sedated, completely snowed and at times even paralyzed.

Before I go on about the drugs.  He's as handsome as ever and I can't wait to get in there and kiss his bare neck!  (Right now there are still some bandages in the way -- and he is supposed to stay sleeping!)  At first I had a quick panic at seeing his neck without his ties, my stomach jumped into my throat before I could even remind myself that this was kind of the entire point of our stay!  Funny how we work?!

For the most part Caelan has been resting well.  He's occasionally wiggled his fingers or opened an eye to have a peek, but even these slight movements are frowned upon and he's given more medication.  At this moment he's on a continuous infusion of morphine and his old buddy versed (midazolam) from the NICU.   These infusions although continuous are still running at a fairly low rate at the moment and I should expect that they'll be going up before they go down.  He's also getting boluses (additional 'shots' through his IV) of these as required, which is quite regularly.  They're also using benadryl and chloral hydrate to keep him sleepy.

In addition he's on cefazolin, which is just a preventative antibiotic to prevent infection post surgery.  Also they've added Prevacid back to his meds to keep any acid reflux from occuring and damaging the vocal cords.

He's already feeding at a nice slow continuous rate.  Something in the tummy is bound to help.

Last night his vent continued to alarm off and it was determined that the intubation tube was actually resting a little low so they needed to bring it back up about half a centimeter.  Now, as much as I've said that Caelan has been resting comfortably, any time they change his diaper or try to suction out the intubation tube he gives them the evil eye and may even move an arm up in protest.  With this in mind they wanted to insure that during this procedure he didn't move AT ALL.  The solution is The Rock- ok it makes me laugh but it's been a long night!  It's actually rocuronium and it temporarily paralyzes him so that even if he woke up, which he hasn't, he wouldn't be able to move.  They only give him a small dose so it doesn't last long, just long enough for the procedure.

Earlier this morning he was running a slight temperature so they've drawn some blood just to check and make sure there's no infections to be concerned about.

I think that's the best I can do for updates...

Can't wait to see him without all the monitors, bandages and tubing... not sure I like being back in this place.  But oh, it will be soooooo worth it!!  Can't help but feel the excitement bubbling up in me!!

Thursday, September 8, 2011


They're just finishing up with Caelan.  We haven't seen him yet but spoke with the Surgeon who's happy with how everything went.  We're waiting for him in the I.C.U. where he'll remain intubated and heavily sedated for the next week.

I wanted to thank everyone for all the well wishes, Nana for staying with the girls, Pam for having breakfast with us and Jo for bringing us lunch!  Thank you friends for helping pass the time. 

Most of all I want to thank Caelan for being such a brave strong boy! 
We love you and can't wait to see you!

Wednesday, September 7, 2011

we have a time

We got a call from the hospital last night.
Surgery will be at 8 o'clock in the morning.
Which means we have to be there by 6:30am.
To wait for the five hour surgery to be done...

If we don't receive a call between now and then telling us otherwise.

Tuesday, September 6, 2011

Rest in Peace

Such a sad day.
Damian's Uncle Wayne passed away this morning.
There are no words when someone is taken suddenly.
So sorry.  Doesn't seem enough.

Our thoughts are with his family during this most difficult time. xo


I've been avoiding you.  My mind is all over the place and I don't feel like I can put together too many any clear thoughts to share.  Scatterbrain would probably be a fairly accurate description.

My stress level is nearing it's max.

We've had another night without a nurse. The night before the first day of school and only a few days before surgery.  Couldn't get much worse.  Although I think it has.  Unfortunately our nurse has possibly broken her ankle. She can't drive.  Even worse is that she's scheduled for the night before surgery too.  I'm really hoping they're able to find someone to take her shift.

Back to school couldn't come fast enough. The girls have spent the entire long weekend at each other's throats.  Fighting non-stop, bickering, arguing... It's been lovely.  Ugh.  We wanted to keep the weekend low key and attempt a few earlier nights in preparation for Tuesday's early morning.  Apparently this was the wrong decision.  The bags are packed with everything all labelled and ready to go.  Waking them up in a bit should be a real treat!  Actually I'm anticipating that things will go rather smoothly this morning because they'll be excited... Tomorrow morning may be a different story!

I really wanted to get some meals in the freezer before the chaos that I'm anticipating will occur over the next month.  Just my luck that I pick the sweaty-hot-stinky day of the weekend to do all my cooking.  But I'm proud to say that there is corn relish canned, there are lasagnas, cabbage rolls, carrot soup, canteloupe loaves, zucchini casserole and pizza sauce in the freezer and a huge batch of taco seasoning made.  I'll call that a success.

Saturday morning we had a sign language lesson for the first time in over a month... Oh we soooo need to practice more.  It's such a "use it or lose it" situation - like any language is.  It was a long two hour struggle.  We have the most patient teacher in the world.  She's fabulous.  We must be so frustrating for her.  We really have to pull up our socks and get committed to this. 

Alright that's my mind dump for today.

Thursday, September 1, 2011


We just had the most fabulous meeting with Kindercare!
Kindercare is the preschool program at the Girls' school and it's where Caelan will be going this Fall.  It's all set up for Caelan to attend with the required supports in place.  We're hopefull that most of this will be for nothing and that surgery will go ahead as scheduled next week, but if not, preschool is still a GO!!  Hooray!  This is a huge relief.  Both financially and mentally.  All that remains is to determine our drop off and pick up times, which is an ordeal in itself.  Thankfully both Damian and I have flexible hours... just not sure they're going to be that flexible.  Oh well, I'm kinda looking forward to it!