Tuesday, April 30, 2013

Encouraging

Often times, when we're attempting to get Ronan to burp, Caelan is cheering him on.  Caelan will chant "I need a bubble!" over and over again...  Usually there's clapping too.
 
 

It's been one week since Caelan's surgery and he's just started using his voice again without grimacing.  As much as I missed his voice and didn't like seeing him in pain struggling to express himself, I must admit that the unusual level of quietness was kind of nice while it lasted.  It was a good motivator for using sign language too. 

Oh well, it's good to see him start feeling better.  He's even started playing again... FINALLY, there is a light at the end of this dreaded recovery tunnel!

Photo taken April 22nd.
Stickers on Ronan's back are from Caelan's pre-op appointment.

Saturday, April 27, 2013

Animals

Caelan is all about his zoo animals lately...


This picture was taken before his surgery.  We were teaching Ronan all about the animals, what they ate, what sounds they make and how to sign their names.  Caelan is such a good brother.

Since his surgery he's played with his animals a few times but he's still not himself.  He's been feeling pretty lousy and we've had lots of snuggles to try and help him feel better.  He's required lots of suctioning.  I've probably suctioned him more in the past couple days than I have in the past couple years.  Coughing obviously hurts his throat.  So does talking with his trache blocked, something he's grown quite accustomed to doing.  As a result he's been more quiet than he has in ages too.   You can tell when his throat hurts because he's not swallowing and gathering saliva in the back of his throat.  When it becomes to much he'll often get stuck in a coughing episode that instantly brings tears running down his grimaced face.  It breaks my heart.  I'm better with it drooling out and I've even tried to get him to spit it out if I notice that it's pooling.

He's already coughed up the blood that we were forewarned would happen and I've spoke to ENT because it happened earlier than we thought it should.  Apparently it could still happen again, so I'm glad I called before crossing that off our checklist of things to expect.  I hadn't even mentioned it to our night nurses yet because I thought we still had a few days before we should see it.

This morning I see a bit more of Caelan, especially compared to yesterday morning.  However we've been told that he'll seem good for a couple days and then get worse than ever and that makes me nervous.  It's been hard seeing him in pain the past couple days and it's nice to see him happier this morning.

I'm so proud of him.  Despite all of his pain and discomfort he's still such a good big brother.  There have been several times that Ronan has had to be put down crying because Caelan needs attention, and through all the tears he's signing that Ronan needs his froggy soother.  His concern for his baby brother is admirable considering his condition...

Thursday, April 25, 2013

CHEO Chart

This is Caelan's CHEO chart,
 
 
all 16 volumes.
 
To put it in perspective...
 
 
it weighs more than Caelan.
 

Wednesday, April 24, 2013

True to their word...

... It really was only a one night stay, even with Caelan's "episode".

In fact, Caelan was moved out of the ICU at midnight last night and back up to the floor.  Our ENT Doctor came by before eight this morning to sign off on all the discharge papers and write Caelan's prescriptions.  As far as our experience at being released from CHEO this one went rather smoothly.

We were sent home with a prescription for enough morphine and celebrex to last 10 days.  So although Caelan is out of the hospital we're only just beginning the recovery process.  He's still getting morphine every four hours and is allowed tylenol every four as well.  We don't want him to be in pain, but it's a bit of a guessing game and a juggle too. I have to admit the idea of having him on morphine, regardless of the dose, for 10 days and then stopping cold turkey ... Well given Caelan's history it just doesn't sound like something Caelan would tolerate.  Hopefully, as the days go on we'll be able to space out his need for morphine and manage more of his discomfort with tylenol.

We've been told that recovery should go pretty well since he doesn't use his throat for eating.  However we were also advised to expect that days 5-7 post op will be the worst. Caelan will be uncomfortable and in more pain, his ears will hurt too and he'll cough up bright red blood.  This is all normal and expected and we shouldn't be alarmed.

It's not expected that he'll be back at school until after May 6th. 

Tuesday, April 23, 2013

I want one!

Caelan was still pretty sedated but awake enough to get into mischief! 
 
 
It's only the beds in the ICU that have these fun buttons, the beds up on the floor aren't nearly so new, fancy or expensive.  This is the first time that Caelan has been in the ICU and alert enough to recognize what they actually did and enjoy them so much!  He was pretty sure that he would like one at home.  Can't say I blame him... although I might want a different mattress!

Jumped the gun...

So apparently I spoke too soon!

No sooner had I posted my Caelan update here and on Facebook that my son decided to have a freak out of sorts...

He's still quite sedated so we've been helping him clear his secretions by suctioning him.  We had just got quite a lot out and he started to cough more. Once we finished with that episode he lifted his IV arm towards me with a question in his eyes like "when is this thing coming off?"  I told him that it couldn't come off yet and that we had to wait a while longer... This upset him.  Really upset him and he held his breath.  In Caelan style.  So we're talking let's hold our breath until we change colours to all kinds of blue and pass out cold.

The nurse and I were frantically trying to manage the circumstances and had Daddy hollering for help out in the hall.  Once I'm convinced that Caelan is breathing again and colour is back on his cheeks I look up to see our entire ENT team; Dr. V, Dr. B and Dr. M, along with their residents and nurses...  Damian told me there were about 18 people in the room.  That's a tight fit for a semi private hospital room!

So that little stunt got us a nights stay in the ICU.  For observation. They just want to make sure this was a "I'm a stubborn little boy who can hold his breath like nobody's business" and not an "I got so upset crying that I couldn't breath" episode.

Dr. V actually just came by for an update and he's still thinking this will be a one nights stay... Hope he's right!

Done!

Just wanted to post a quick update to let everyone know that Caelan is out of surgery and everything went well.  Tonsils and adenoids have been removed and mr. C is resting comfortably right now.  He was a little "wrangy" coming out of the anaesthetic but nothing a little extra fentanyl couldn't fix!

Monday, April 22, 2013

Night before

So it's the night before surgery.

We went to our pre-op appointment this afternoon and was happy to see our most favourite anaesthesiologist.  Someone who is very familiar with our Caelan and his love of drugs!  He was part of the team that helped us manage Caelan's withdrawal after getting his trache put back in 2011.  He remembers Caelan and has made note of his high tolerance for medication and his weaning difficulties.

We have to be there for 6:30 in the morning.  Surgery is scheduled for 8am.

  • We've arranged for Gramma to come look after the girls before school and Ronan for the day.
  • Schedules (very general ones for the little man who doesn't really have one) have been outlined.
  • Lunches are made.
  • Dinner is in the fridge.
  • Caelan's bag is packed.
  • Surprises for the brave boy are bought.
  • Snacks are ready to be packed in the morning for Mom and Dad.
  • Mom and Dad's bags are packed full of distractions to keep them occupied.
  • Appointments have been cancelled.
  • Nursing has been suspended.
  • Teachers and school have been notified.

Now I just need to get some sleep... Easier said than done with these pre-surgery nerves and a six week old!

Tuesday, April 16, 2013

we have a date

Caelan had a recent appointment with ENT... Actually it was right after we brought Ronan home from the hospital so about a month ago now...

That appointment was part of the Complex Upper Airway Clinic and we discussed the failed attempt at removing Caelan's trache back in October 2011.  Ultimately our goal is to try and remove the trache again with better results. 

We were encouraged to try and get Caelan wearing his swedish nose and speaking valve as much as possible to strengthen his breathing, especially since he does such a great job blocking it with his finger.

At the end of the appointment they did a scope and found that the upper airway seemed smaller than previous scopes had indicated.  In fact they thought the adenoids were quite enlarged and a plan was put in place to remove them and Caelan's tonsils.

The phone call came today.  April 23rd Caelan will be going into surgery yet again, this time to remove his adenoids and tonsils in an attempt to open that upper airway so that hopeful one day he will be able to breath without his trache.

My concerns are a plenty.  Surgery is always a big deal, regardless of how many he's had to go through.  More specifically though, opening up his airway is a delicate balance.  We want it open enough that he's able to breathe comfortably, but not so open that he aspirates easily.  He already produces copious amounts of secretions and I'm a little worried about where they're all going to go with a new wide open airway.

The good news is that they're optimistic that this will be a one night stay. 

Can't say we've had too many of those!

Friday, April 12, 2013

And in this corner...

We have Ronan weighing in...

At birth: 7lbs. 9 oz.

At two weeks:  8lbs. 6oz.

At one month:  9lbs. 6oz.

Already packing away the newborn clothes...

Tuesday, April 9, 2013

Ronan's first month

March 9, 2013
 
March 14, 2013 
 
March 19, 2013
 
March 21, 2013
 
March 27, 2013
 
March 30, 2013

March 31, 2013

April 3, 2013

April 5, 2013

Monday, April 8, 2013

Tears of joy

Have I mentioned how much I love the people that support Caelan at school??!?!
 
Here's a video that his EA just sent me minutes ago.
 
video

That's my boy walking!!  So very PROUD of him!!

Cousins at Easter




Sunday, April 7, 2013

Ryland and Ronan

 
Ryland stole some kisses from Ronan while he was being burped...
 
In the below photo it looks like Ronan is challenging Ry to put her fists up and try that again!
 

Saturday, April 6, 2013

Teeth

I am so happy with the work Caelan's EAs have done with him at school regarding brushing his teeth.  They've accomplished what we only hoped for...

 
He is doing a great job and I'm so proud of him.

 
And he's so proud to show off these skills to his baby brother!

Wednesday, April 3, 2013

Thing FOUR!!



We tried really hard to get a picture of all our "Things" but this was the best one of the lot!

Tuesday, April 2, 2013

Sugarbush



Crazy as it may seem, we headed off to the sugarbush with our one week old son. 


 
He slept through his first adventure, but the rest of us had a great time.

 
 
 
 
Thanks Auntie Vicky for a wonderful morning!!


Monday, April 1, 2013

Winter Bucket List - Revisited

I think I may have been a little over ambitious this year given that I was very pregnant for most of the winter.  I hadn't taken into consideration that my snowpants wouldn't fit!
 
  1. Go ice fishing. Fishing in a boat with Caelan and his trache is just a bit too scary for me, in fact it's pretty much out of the question. A good friend keeps reminding me of this alternative so hopefully this winter we'll make it out to their hut.
  2. Enjoy a beavertail and hot chocolate in the outdoors. If you live in or near Ottawa this is a must. Usually, enjoyed on the canal or during Winterlude.
  3. Winterlude - do something, anything! It's a huge attraction for this area and we should participate
  4. Encourage Damian and the girls to go toboganning on a real hill... Maybe even Caelan too if the weather cooperates.
  5. Have fun with some Christmas baking and make sure the kids get involved. DONE!
  6. Enjoy a spa treatment with my sisterfriends. Our date is already tentatively booked!DONE!
  7. Build a snowman DONE!
  8. Make snowangels DONE!
  9. Take a walk while it's snowing - never as a family :(
  10. Curl up together as a family and watch The Grinch who Stole Christmas and Polar Express HALF DONE! Can't believe we didn't watch Polar Express this year!!
  11. Do ONE of the holiday things I've pinned on pinterest... DONE, DONE and DONE!
  12. Watch a Santa Clause Parade. In recent years we've always tried to get to the Orleans Parade of Lights. DONE!
  13. See the Christmas lights on Taffy Lane or downtown Ottawa DONE!
  14. Upper Canada Village's Alight at Night Every year I think this is something I'd like to do and we have yet to do it! HAVE TO ADD TO NEXT YEAR'S LIST -- AGAIN!!!
  15. Roast marshmallows over a campfire in the snow
  16. Go to the sugarbush and get some fresh maple syrup... although this might technically happen in the spring there is still snow on the ground so that makes it a winter activity! DONE!
 
More than half though - so I'll still call it a success!!