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.

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...

CHEO Chart

This is Caelan's CHEO chart,

 

 

all 16 volumes.

 

To put it in perspective...

 

 

it weighs more than Caelan.

 

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. 

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!