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| Best of our Pirate Ryland |
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| Best of Ginny Weasley, student at Hogwarts, a.k.a. Darcy |
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| Best of our Mickey Mouse - Caelan |
Monday, October 31, 2011
Halloween 2011
Sunday, October 30, 2011
diagnosis
just a cold.
However, for Caelan, "just a cold" this soon after surgery puts him into respiratory distress and he wins two nights free accomodations in the ICU! We've been told to expect to win more passes over the course of the winter. Hooray for us!
Today Caelan moved up to the floors and out of the ICU. Daddy made a really strong case for just moving him back home but it didn't fly with ENT. They want to monitor Caelan for a bit longer and make sure he's over the worst of it.
Meanwhile, me and the girls have been home. I'm fighting the same bloody cold Caelan has, same one I feel like I've had for the month since our last stay in hospital ended. For that reason Daddy's been at the hospital since Friday night, and in CHEO hours, that's a lifetime. This afternoon I'm headed in to provide him some relief as I'm sure he's really looking forward to a good nights sleep!
However, for Caelan, "just a cold" this soon after surgery puts him into respiratory distress and he wins two nights free accomodations in the ICU! We've been told to expect to win more passes over the course of the winter. Hooray for us!
Today Caelan moved up to the floors and out of the ICU. Daddy made a really strong case for just moving him back home but it didn't fly with ENT. They want to monitor Caelan for a bit longer and make sure he's over the worst of it.
Meanwhile, me and the girls have been home. I'm fighting the same bloody cold Caelan has, same one I feel like I've had for the month since our last stay in hospital ended. For that reason Daddy's been at the hospital since Friday night, and in CHEO hours, that's a lifetime. This afternoon I'm headed in to provide him some relief as I'm sure he's really looking forward to a good nights sleep!
Friday, October 28, 2011
Sometimes
It doesn't feel so great to be right... Ya know, when I said they'd admit him because they never know what else to do...
Caelan has been admitted to the Intensive Care Unit for respiratory distress.
While in the Emergency Room he received an epi mask which I believe is an anti inflammatory. It seemed to work well at getting rid of the stridor and easing Caelan's work at breathing. The same surgeon that we talked to this afternoon will be in tomorrow morning. I believe the plan is to try and get another scope done to see what's going on.
Caelan has been admitted to the Intensive Care Unit for respiratory distress.
While in the Emergency Room he received an epi mask which I believe is an anti inflammatory. It seemed to work well at getting rid of the stridor and easing Caelan's work at breathing. The same surgeon that we talked to this afternoon will be in tomorrow morning. I believe the plan is to try and get another scope done to see what's going on.
enter your favourite curse word *here*
and then *here* and *here* and *here*...
and maybe a couple more times for good measure... *here*
I should explain...
I know I've gone on about how Caelan's days have been great - there's no question about it! Unfortunately his nights have been horrible and they've been getting worse. He's up every 30-40 minutes coughing and crying. His stridor - the noise he makes when he's upset and working to breath - has been getting louder and louder. The stridor is expected when he's upset and we know that when he gets REALLY upset it can sometimes take a little while to go away, even after he's settled down. We wondered if this is what we were to expect if he had a cold or some type of infection, but really had no idea. We had discussed it briefly and decided it would be a good idea to be keeping track of under what circumstances the stridor seemed to be worse. Last night he was stridorous for almost 4 hours straight, even when he settled to sleep. It just seemed to become more and more pronounced but he wasn't getting more upset. Eventually, over the following three hours while he slept the stridor disappeared and when he awoke it was gone. We thought the crisis was averted.
It wasn't.
This afternoon his stridor picked up again. Rather suddenly and kind of out of the blue. Not good. Not good at all. We called ENT and spoke with the surgeon who did Caelan's second surgery. He could hear Caelan's stridor in the background and recommended that we bring him in immediately. I should clarify that it's not so much because of what he could hear, but because we confirmed that he was indrawn and working at it. Working to breath = not good.
We know that once we get him to the Emergency Room they won't know what to do with him and will simply admit him. That's why this becomes more than a simple "bring him in so we can check it out" kind of thing. That's why I need you to scream your favourite curse word now. Because I'm in a house with children and that's frowned upon... but that's what I feel like doing.
CHEO is an amazing place. I don't know what we'd do without it.
Right now, though... I'd just like a break from that place...
A really, REALLY, long break.
And my whole happy, healthy family home together for a long time!
and maybe a couple more times for good measure... *here*
I should explain...
I know I've gone on about how Caelan's days have been great - there's no question about it! Unfortunately his nights have been horrible and they've been getting worse. He's up every 30-40 minutes coughing and crying. His stridor - the noise he makes when he's upset and working to breath - has been getting louder and louder. The stridor is expected when he's upset and we know that when he gets REALLY upset it can sometimes take a little while to go away, even after he's settled down. We wondered if this is what we were to expect if he had a cold or some type of infection, but really had no idea. We had discussed it briefly and decided it would be a good idea to be keeping track of under what circumstances the stridor seemed to be worse. Last night he was stridorous for almost 4 hours straight, even when he settled to sleep. It just seemed to become more and more pronounced but he wasn't getting more upset. Eventually, over the following three hours while he slept the stridor disappeared and when he awoke it was gone. We thought the crisis was averted.
It wasn't.
This afternoon his stridor picked up again. Rather suddenly and kind of out of the blue. Not good. Not good at all. We called ENT and spoke with the surgeon who did Caelan's second surgery. He could hear Caelan's stridor in the background and recommended that we bring him in immediately. I should clarify that it's not so much because of what he could hear, but because we confirmed that he was indrawn and working at it. Working to breath = not good.
We know that once we get him to the Emergency Room they won't know what to do with him and will simply admit him. That's why this becomes more than a simple "bring him in so we can check it out" kind of thing. That's why I need you to scream your favourite curse word now. Because I'm in a house with children and that's frowned upon... but that's what I feel like doing.
CHEO is an amazing place. I don't know what we'd do without it.
Right now, though... I'd just like a break from that place...
A really, REALLY, long break.
And my whole happy, healthy family home together for a long time!
Thursday, October 27, 2011
go figure?!
Today Caelan cried when Damian dropped him off at preschool - but we're on to that game!
The new act came when he cried when it was time to leave too! To think he wanted to stay and play!! Hooray!
The new act came when he cried when it was time to leave too! To think he wanted to stay and play!! Hooray!
Wednesday, October 26, 2011
Typical tears
Caelan had a great day at preschool today! It brings such a smile to my
face to get this news.
face to get this news.
The tears this morning were only for Dad and dried up quickly once he left.
Just like other 3 year olds! How awesome is that??
He spent the entire day there, had a 45 minute nap and tons of fun.
He can apparently navigate his walker about the classroom without crashing
into everything, and even does well with it outside in the play yard.
I'm so proud of my big boy!!
Now if only he would sleep through the night!?!?
That would be icing on the cake!!
ten and eight
My tween and pre-tween are full of attitude lately.
At moments it's more than I can handle.
At moments it's more than I can handle.
It sounds like it's considered normal behaviour for these ages
But I would really prefer that it wasn't the norm for our house.
Everything seems to become an argument.
Everything seems to become a melt down.
And yet, they really are good girls.
Everyone else tells me how good they are.
Just not so much at home... at least not for some really basic things.
We've introduced a Responsibility Chart.
It's not for chores, or behaviours.
It's just to outline what's expected of them.
There's no point in arguing about these responsibilities.
And while we're at it, no complaining or whining either.
I just don't want to hear it.
Things like brushing your teeth or your hair, or
having a shower are really non-negotiable.
Putting your dirty clothes in the laundry and setting the table.
Doing your homework and clearing the dinner dishes.
Are these really dramatic tantrum inducing obligations?
Unfortunately, they sometimes are in our house.
It's come to this;
If they don't want to do what's expected of them,
then I don't want to hear requests for anything.
Don't ask for toys, books, clothes or money.
Don't ask to go on playdates, to dances, or sleepovers.
These are privileges to be earned, not rights.
ugh.
That's an argument I expected to have to use with
a 16 year old about getting their drivers licence!
What are we going to do when they're teenagers?!?!
Tears
Caelan cried again this morning when he got dropped off at preschool.
He actually said no, no, no.
He didn't want Daddy to leave.
Breaks my heart.
Tuesday, October 25, 2011
Happy Rudolph Day!
Do you know what Rudolph Day is?
Did you know that there are 61 days until Christmas?
Well I *LOVE* Christmas. It's my favourite holiday. However, the excitement and let's face it, stress, of the season sometimes get to me. I've been known to get sick at Christmas more than once and have come to realize that I need to learn a way to handle the stress of the season if I want to truly enjoy it.
My search was mainly on-line and I've found lots of suggestions. There are tons of Christmas blogs out there; people who keep the Christmas Spirit alive all year round. That's where I first heard of Rudolph Day. The Rudolph Club is a group of people that put some thought into Christmas on the 25th of every month. Starting. In. January. uh huh. They're planning they're holiday menu this month, but they've already made gift lists, organized gift cupboards, and started shopping. I wasn't sure I could go that far but am amazed at how many people out there do!! Go ahead google it. I dare you!
I certainly admit to being a bit of a control freak and a definite list lady and came across a website that I do enjoy. Organized Christmas is a spin off of Organized Home another interesting site where I've found some useful information. At Organized Christmas they have a 6 week Christmas Countdown that started this past Sunday. This week is all about planning, calendars and lists. They encourage you to create a Christmas Planner which is something I did last year for myself and found extremely helpful. I made mine small enough that I could carry it in my purse so when I was out and about I was able to keep track of my purchases. I knew who I still had on my list and who I was definitely done shopping for. In my planner I had pages for budgets, calendars to record holiday parties and events, menu planners, baking lists and home spruce up ideas I wanted to accomplish before the big day. Hmm... Can you tell I get excited about the planner? Really, though, the point is that if you follow the 6 week countdown you're way ahead of the game. The 6 weeks end early in December and you're able to relax and enjoy the holiday season!
My question to you is when do you start thinking about Christmas?
Did you know that there are 61 days until Christmas?
Well I *LOVE* Christmas. It's my favourite holiday. However, the excitement and let's face it, stress, of the season sometimes get to me. I've been known to get sick at Christmas more than once and have come to realize that I need to learn a way to handle the stress of the season if I want to truly enjoy it.
My search was mainly on-line and I've found lots of suggestions. There are tons of Christmas blogs out there; people who keep the Christmas Spirit alive all year round. That's where I first heard of Rudolph Day. The Rudolph Club is a group of people that put some thought into Christmas on the 25th of every month. Starting. In. January. uh huh. They're planning they're holiday menu this month, but they've already made gift lists, organized gift cupboards, and started shopping. I wasn't sure I could go that far but am amazed at how many people out there do!! Go ahead google it. I dare you!
I certainly admit to being a bit of a control freak and a definite list lady and came across a website that I do enjoy. Organized Christmas is a spin off of Organized Home another interesting site where I've found some useful information. At Organized Christmas they have a 6 week Christmas Countdown that started this past Sunday. This week is all about planning, calendars and lists. They encourage you to create a Christmas Planner which is something I did last year for myself and found extremely helpful. I made mine small enough that I could carry it in my purse so when I was out and about I was able to keep track of my purchases. I knew who I still had on my list and who I was definitely done shopping for. In my planner I had pages for budgets, calendars to record holiday parties and events, menu planners, baking lists and home spruce up ideas I wanted to accomplish before the big day. Hmm... Can you tell I get excited about the planner? Really, though, the point is that if you follow the 6 week countdown you're way ahead of the game. The 6 weeks end early in December and you're able to relax and enjoy the holiday season!
My question to you is when do you start thinking about Christmas?
Monday, October 24, 2011
full day at preschool
Caelan spent another morning at preschool on Friday. Damian stayed with him the majority of the time but did step out for about 40 minutes to see how Caelan would handle it. We’re told that Caelan did really well during this time and although he did ask where Dad was, he didn’t get upset.
Which brings us to today. Damian dropped Caelan off at 9 o’clock this morning and left. He returned to the preschool a couple hours later just to ensure there were no questions about starting Caelan’s feed and giving him his medication at noon. This also enabled him to be there when the kids went outside to play. This is a bit of a challenge for Caelan since his gross motor skills are so delayed. Bum scooting around the play yard is not quite the same. We’ve brought his walker but the yard is a bit hilly. Hopefully, it will be motivation for our little man to stand up and use those legs like the other kids!
When they come inside they’ve got lunch and then quiet time and we were curious to see how Caelan would respond to this part of the routine. No problems with lunch, but not so fussy on the whole aspect of quiet time. Go figure, eh? They showed him his little bed but he was more interested in getting back to playing. When it was clear that everyone was going to ‘bed’ he started to cry. They wanted to see how it would play out and let him cry a bit. Then they realized that they couldn’t back down and now had to see it through. When he started to calm down Damian left but was called back when someone let a door slam closed startling him awake. Caelan got quite upset... We’ll have to try again tomorrow.
We realize that three year olds all over the world get dropped off at daycare regularly without incident. We’re definitely taking things much slower with Caelan than we ever did with the girls, but circumstances are so different. As much as we try to treat Caelan the same, it’s impossible. This boy has been through so much and has spent minimal time away from us. This wasn’t a choice we made, the decision was made for us when he got his tracheotomy. Now that it’s gone … well it’s an adjustment for all of us.
On top of what I consider ‘normal’ issues we still have some other concerns. We’re still dealing with some symptoms of withdrawal from the narcotics. It’s difficult to say how much is really withdrawal and how much is him now playing manipulation games. The good news is that Caelan’s days are pretty good. He’s still got some anxiety and really likes to have his family where he can see them, but for the most part I’d be tempted to say he’s close to being back to normal. Argh! I feel like I’m jinxing things by typing that out! Unfortunately, his nights are another matter. Caelan still isn’t sleeping well and wakes frequently in a cold sweat, coughing, crying and yelling for me. This isn’t getting better at all. In fact, his meds make him sleepy enough to warrant a tiny mid day nap and it’s not uncommon for him to wake with a start in the middle of the day in the same manner. So that’s my concern for preschool, that he actually falls asleep during quiet time (like today) and wakes up in a panic (like today). Damian and I have a hard enough time settling him down at home – how’s this going to work at pre-school when he falls asleep during quiet time? Will he get comfortable enough there that they’ll be able to calm him down? I’d like to think so, but it’s hard to let him go through that too…
Sunday, October 23, 2011
Friday, October 21, 2011
Anyway - by Mother Teresa
People are often unreasonable, illogical and self centered;
Forgive them anyway.
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Do good anyway.
Give the world the best you have, and it may never be enough;
Give the world the best you've got anyway.
Give the world the best you've got anyway.
You see, in the final analysis, it is between you and your God;
It was never between you and them anyway.
It was never between you and them anyway.
[Reportedly inscribed on the wall of Mother Teresa's children's home in Calcutta, and attributed to her. However, an article in the New York Times has since reported (March 8, 2002) that the original version of this poem was written by Kent M. Keith.]
Thursday, October 20, 2011
Pre-school
I forewarned Caelan that if he continued to make such great improvements that he'd find himself at pre-school before he knew it. Well, I guess he liked that plan because he's been more and more himself everyday.
On Wednesday, Damian and Caelan spent the morning at Kindercare. It's a pre-school program located in a space adjacent to the girls' school in Russell. We weren't convinced that Caelan was ready for the full day program but thought he'd do well with a visit. He still hasn't regained all his strength and abilities from his month spent in hospital and he's also picked up having a nap again. Our intention is that he'll eventually be there full days and also spend a couple afternoons at the OCTC pre-school program.
I'm happy to say that it went FABULOUSLY!!!!
Caelan had a BLAST!!! At first, he was a bit apprehensive, which is understandable given that this would be a completely new environment for him. Damian stayed close as they made there way over to the books and waited for circle time. Caelan was happy to see the books and was quickly at ease. However, the more comfortable he got in these new surroundings, the more he noticed. He realized there were toys, lots and lots of toys... so why were they sitting there looking at books! Go, go, go!!
He was receptive to both his Aid (K) and one of the Directors of the pre-school (D). He happily accepted assistance from both of them and kept everyone busy. He played blocks, trucks, puzzles, and kitchen. He painted and played playdoh. All before lunch! It was a busy morning for him.
I couldn't have wished for more.
On Wednesday, Damian and Caelan spent the morning at Kindercare. It's a pre-school program located in a space adjacent to the girls' school in Russell. We weren't convinced that Caelan was ready for the full day program but thought he'd do well with a visit. He still hasn't regained all his strength and abilities from his month spent in hospital and he's also picked up having a nap again. Our intention is that he'll eventually be there full days and also spend a couple afternoons at the OCTC pre-school program.
I'm happy to say that it went FABULOUSLY!!!!
Caelan had a BLAST!!! At first, he was a bit apprehensive, which is understandable given that this would be a completely new environment for him. Damian stayed close as they made there way over to the books and waited for circle time. Caelan was happy to see the books and was quickly at ease. However, the more comfortable he got in these new surroundings, the more he noticed. He realized there were toys, lots and lots of toys... so why were they sitting there looking at books! Go, go, go!!
He was receptive to both his Aid (K) and one of the Directors of the pre-school (D). He happily accepted assistance from both of them and kept everyone busy. He played blocks, trucks, puzzles, and kitchen. He painted and played playdoh. All before lunch! It was a busy morning for him.
I couldn't have wished for more.
Wednesday, October 19, 2011
Happy Birthday Caelan!!
Oh My Boy!
I can't believe that you're three years old today.
You've come so far and I'm so proud of you.
You are one of the strongest people I know.
You've already taught me so much and I know there are more lessons to come.
I love you oodles,
xoxo
Tuesday, October 18, 2011
Rewind
Came home from work and got changed.
Inhaled dinner and packed Caelan up.
Headed off to his Urology appointment.
Caelan cried the first 15 minutes in the car.
That's half way there.
He wanted Daddy to come with us.
Too bad, so sad, stuck with Momma.
Managed to keep him awake for the drive.
Arrive only a few minutes late.
Caelan wants to colour at the little tables.
It's too late and no crayons/paper are available.
We settle on steering the big wheels.
This is good. We're all smiles.
Don't have to wait long.
Learn this appointment is to check testes.
To make sure they've descended.
What do I think?? um.. no idea.
Does that make me a bad Mom?
Maybe not, but...
In my attempt to get Caelan to the examination table
I screwed up...
I managed to pull Caelan's mic-key out.
That's his feeding tube.
Not sure what it got caught on.
I know better. Have to move slow.
Always have to check where the line is.
Caelan wasn't impressed.
Neither was I.
That makes me feel like a horrible Mom
and his eyes echo that sentiment.
So sorry.
Re-group and put mic-key back in.
Afterthought - that hit the hospital floor
and I just put it back in my son.
(Shudder)
Calm Caelan down.
Time for the examination.
Apparently it's not welcome.
Caelan is not impressed.
Apparently testes retract when you cry.
Making it impossible to know if they've descended.
We'll need to reschedule.
Come back another day and do this all over again.
We get back to the van.
It's seven o'clock.
Caelan has fallen asleep.
I'm deflated, frustrated, exhausted.
I can't imagine that it will be a very long night
with Caelan already asleep at seven o'clock.
I think I'd like a do-over.
Inhaled dinner and packed Caelan up.
Headed off to his Urology appointment.
Caelan cried the first 15 minutes in the car.
That's half way there.
He wanted Daddy to come with us.
Too bad, so sad, stuck with Momma.
Managed to keep him awake for the drive.
Arrive only a few minutes late.
Caelan wants to colour at the little tables.
It's too late and no crayons/paper are available.
We settle on steering the big wheels.
This is good. We're all smiles.
Don't have to wait long.
Learn this appointment is to check testes.
To make sure they've descended.
What do I think?? um.. no idea.
Does that make me a bad Mom?
Maybe not, but...
In my attempt to get Caelan to the examination table
I screwed up...
I managed to pull Caelan's mic-key out.
That's his feeding tube.
Not sure what it got caught on.
I know better. Have to move slow.
Always have to check where the line is.
Caelan wasn't impressed.
Neither was I.
That makes me feel like a horrible Mom
and his eyes echo that sentiment.
So sorry.
Re-group and put mic-key back in.
Afterthought - that hit the hospital floor
and I just put it back in my son.
(Shudder)
Calm Caelan down.
Time for the examination.
Apparently it's not welcome.
Caelan is not impressed.
Apparently testes retract when you cry.
Making it impossible to know if they've descended.
We'll need to reschedule.
Come back another day and do this all over again.
We get back to the van.
It's seven o'clock.
Caelan has fallen asleep.
I'm deflated, frustrated, exhausted.
I can't imagine that it will be a very long night
with Caelan already asleep at seven o'clock.
I think I'd like a do-over.
Saturday, October 15, 2011
rubber ducks
We try not to say the word bath around here.
We don't sign it either.
If the word slips out in a moment of foolishness,
there's a little boy who goes absolutely crazy about getting in!
I've always considered that a good thing, because let's face it,
I just don't think there are that many boys out there that like being clean!
Caelan has always loved his bath.
I was pretty excited about his first bath sans trache.
It was always a bit of a nerve wracking experience,
since splashing is half the fun!
Unfortunately, his first bath at home after this most recent hospital stay was anything but fun. I'm chalking it up to the withdrawal because Caelan cried through the entire ordeal! It was heartbreaking to see him so thoroughly upset doing something he always took so much pleasure in.
Especially now that it could be fun on a whole new level.
The second bath went much, much better.
Caelan loves playing with his rubber ducks.
They always get tossed in first and, yes, they're kissing!
He thinks that's hillarious when compared to making them
swim, fly, bathe, jump, dance, eat, etc., ...
And washing hair? That used to be the scarriest of all!
But now... well I had plenty of time to take this shot because it was a while before I could get him to sit up!
But now... well I had plenty of time to take this shot because it was a while before I could get him to sit up!
Lovin' it!!
Friday, October 14, 2011
be happy
"The secret of contentment is knowing how to enjoy what you have, and to be able to lose all desire for things beyond your reach."
— Yutang Lin
— Yutang Lin
Thursday, October 13, 2011
Everyday
Caelan seems to be getting better.
Today there was more playing.
Blocks, tools and beading bugs.
He started riding his ice cream truck.
Even some bum scotching, all be it a very short distance.
Smiles and giggles a plenty.
If he keeps this up he'll be at preschool before he knows it!
Unfortunately there was also a nap...
which means he's not so much interested in sleeping tonight...
Today there was more playing.
Blocks, tools and beading bugs.
He started riding his ice cream truck.
Even some bum scotching, all be it a very short distance.
Smiles and giggles a plenty.
If he keeps this up he'll be at preschool before he knows it!
Unfortunately there was also a nap...
which means he's not so much interested in sleeping tonight...
Wednesday, October 12, 2011
Med Sched
Here's the list of medications that we're giving Caelan at home now...
Clonidine and methadone are both to help with the withdrawal.
The white and pink amoxil are the new anitbiotics that they just started him on, or at least that's what I call them. They have much longer complex names - novamoxin and amoxicillin /clavulanic acid suspension. They're penicillin-type antibiotics. They're pretty all encompasing and should cover any possible bacterial infections.
Melatonin is to help him get a better, sounder sleep.
Prevacid is an anti reflux medication that Caelan used to be on prior to his fundoplication. It's a precaution med to ensure that we're doing everything possible to protect the surgical site.
Nitrofurantoin is the prophylactic antibiotic that Caelan takes to protect his solitary kidney from the risks associated with urinary tract infections and urinary reflux.
We're continuing him on the same feeding schedule for now. He has breakfast starting at 11pm, running at 70 ml/hour to a total volume of 500 mls. Lunch starts at 11am and dinner at 5pm. These both run at 110 ml/hour to a total volume of 250 mls each. We're hoping that once everything settles we'll be able to increase the rate of those daytime feeds again and hopefully start a more traditional breakfast, lunch and dinner schedule with no overnight feeding. Only time will tell.
| 6am | clonidine |
| white amoxil | |
| pink amoxil | |
| 11am | vitamin D |
| 12pm | clonidine |
| 2pm | white amoxil |
| pink amoxil | |
| 6pm | clonidine |
| 9pm | methadone |
| melatonin | |
| 10pm | prevacid |
| 11pm | white amoxil |
| pink amoxil | |
| 12am | nitrofurantoin |
| clonidine |
Clonidine and methadone are both to help with the withdrawal.
The white and pink amoxil are the new anitbiotics that they just started him on, or at least that's what I call them. They have much longer complex names - novamoxin and amoxicillin /clavulanic acid suspension. They're penicillin-type antibiotics. They're pretty all encompasing and should cover any possible bacterial infections.
Melatonin is to help him get a better, sounder sleep.
Prevacid is an anti reflux medication that Caelan used to be on prior to his fundoplication. It's a precaution med to ensure that we're doing everything possible to protect the surgical site.
Nitrofurantoin is the prophylactic antibiotic that Caelan takes to protect his solitary kidney from the risks associated with urinary tract infections and urinary reflux.
We're continuing him on the same feeding schedule for now. He has breakfast starting at 11pm, running at 70 ml/hour to a total volume of 500 mls. Lunch starts at 11am and dinner at 5pm. These both run at 110 ml/hour to a total volume of 250 mls each. We're hoping that once everything settles we'll be able to increase the rate of those daytime feeds again and hopefully start a more traditional breakfast, lunch and dinner schedule with no overnight feeding. Only time will tell.
poop-astrophy
Damian called to tell me he just turned around and found Caelan sitting in
a puddle of poop!
a puddle of poop!
It's apparently a side effect of the new antibiotics.
It's one of those days where I'm kind of happy to be at work. he he he
Sorry about the visual.
4am
This is after the 2am coughing fit and the 3am dirty diaper
and he signs "up, up, all done!"
Despite all that Momma's awful proud since he sat up by himself. xo
But where is my night nurse???
Oh yah, now that he's up all night without a trache we don't need one. Welcome to normal!
Tuesday, October 11, 2011
home again, home again, jiggety jig
I'm relieved to say that Caelan came back home again this afternoon. When I got home from work he was acting more like himself which was such a refreshing sight! He's got two new antibiotics to add to the list of meds that he's now taking. It's quite an impressive list that I'll try to post soon.
Right now, I'm heading to bed. It's been a long day and I seem to be losing my voice. Just what I need!
Right now, I'm heading to bed. It's been a long day and I seem to be losing my voice. Just what I need!
dumb fever
I brought Caelan into emergency yesterday morning.
Sunday he seemed even less like himself and both Damian and I were
concerned.
Monday morning around 3am Caelan spiked a fever.
That was enough for me to bring him in.
Sunday he seemed even less like himself and both Damian and I were
concerned.
Monday morning around 3am Caelan spiked a fever.
That was enough for me to bring him in.
I suspected pneumonia. I just wanted a chest x-ray to prove me wrong.
With Caelan's vocal cords pinned open he's at a greater risk for aspiration
pneumonia.
I'll explain that more in another post.
I hate going to emergency.
I hate having to fight to be heard.
I hate not being heard.
It's all so frustrating.
Caelan remembered the hospital all too well.
He freaked. He went beserk.
No, that's an understatement. There are no words.
... In the end we were both exhausted
Then he acted darn near normal.
I think I may have over-reacted.
But by then they wouldn't let us go home.
He was admitted into the hospital.
And this morning I'm at work.
My son is in the hospital and I'm at work.
I don't like that.
I don't do it well.
Friday, October 7, 2011
Emergency kit
While Caelan had his tracheostomy and feeding tube we never went anywhere without this emergency kit.
We've now gone from that to this...
Just that one tiny plastic bag...
gotta love that!
Makes me a wee bit giddy.
withdrawal SUCKS!
I knew - I know - that Caelan has a long way to go before being himself, but it still sucks. A part of me hoped that we would get him home and he would see his toys and his sisters and it would make all the difference. He'd want to play, he'd be happy and smiling and would just feel better because of it.
Unfortunately that's far from the way it's been.
Bringing Caelan home has been like bringing home a new baby. We have to learn a new routine and adapt to this new and different way of life. Our boy, who since originally coming home has always slept through the night, now wakes up crying and calling out for us at all hours. He hasn't woken happy once and he never used to wake unhappy. He's jumpy. He startles so easily and always seems to be a bit on edge. He wants Damian and I both by his side constantly. He truly panics if left alone for a minute and clings to you upon your return. These things have gotten worse since we got home, where as I thought they'd get better being in his own surroundings. He's so not himself it's kind of hard to watch. At least when he was in the hospital you could rationalize that he was in different and unfamiliar surroundings being poked by various teams of people at all hours of the day and night.
These drugs are really wreaking havoc on our little guy. It really, really sucks!
On a positive note, we're getting lots of snuggles in. So NOT our boy, but definitely a much more welcome side effect of withdrawal
Unfortunately that's far from the way it's been.
Bringing Caelan home has been like bringing home a new baby. We have to learn a new routine and adapt to this new and different way of life. Our boy, who since originally coming home has always slept through the night, now wakes up crying and calling out for us at all hours. He hasn't woken happy once and he never used to wake unhappy. He's jumpy. He startles so easily and always seems to be a bit on edge. He wants Damian and I both by his side constantly. He truly panics if left alone for a minute and clings to you upon your return. These things have gotten worse since we got home, where as I thought they'd get better being in his own surroundings. He's so not himself it's kind of hard to watch. At least when he was in the hospital you could rationalize that he was in different and unfamiliar surroundings being poked by various teams of people at all hours of the day and night.
These drugs are really wreaking havoc on our little guy. It really, really sucks!
On a positive note, we're getting lots of snuggles in. So NOT our boy, but definitely a much more welcome side effect of withdrawal
Thursday, October 6, 2011
words of wisdom
You never know how strong you are.... until being strong is the only choice you have!
Wednesday, October 5, 2011
Surprise!
He's home!!
Our surgeon stopped in on the recovery ward on Monday evening and I immediately began harrassing him about when we should expect to be heading home. I went so far as to hint that it would be nice to have him home for Thanksgiving. I wasn't convinced it would happen but it was a wish. I wasn't sure that we could get a prescription for methodone or clonidine and I knew that weaning was going to be a long road.
I was very surprised when the Doctor said to give him 48 hours. 48 hours?!! Really?!? I was almost excited beyond words but at the same time very sceptical.
On Tuesday, one of the three Doctors at CHEO who can prescribe methodone came by for his daily check in. In his hand was a prescription for methodone with very specific weaning instructions! I could barely believe my eyes! Then he returned a few minutes later with another prescription for Caelan's clonidine. Ok, now this was getting real.
By mid afternoon it was well known through the staff that we were heading home Wednesday. CCAC, the agency that ensured we had all the equipment and support required at home, came by and officially discharged us! That was a huge moment. HUGE.
It did occur to us that with prescriptions in hand there was no real reason for us to stay another night at CHEO. Regardless, we knew the process of actually getting out the door was always a long and slow one and I headed home to get the girls off the bus.
I wasn't home five minutes when Damian called to ask how quickly I could come back because we had the green light to take him home. The girls didn't know what hit them. They got off the bus and were ushered into the van and we were off to bring Caelan home.
We didn't need to rush. Remember how I said getting out was a long slow process? It really is. Three. Hours. Later. We were finally out of there!!
Our boy is far from himself. His weaning of methodone will take until the end of this month and we won't start weaning the clonidine until after that. (thank goodness we didn't have to stay in hospital to do that!!) It feels so good to have him home. We have lots to figure out as everything is different now, but we're happy to do it!
Our surgeon stopped in on the recovery ward on Monday evening and I immediately began harrassing him about when we should expect to be heading home. I went so far as to hint that it would be nice to have him home for Thanksgiving. I wasn't convinced it would happen but it was a wish. I wasn't sure that we could get a prescription for methodone or clonidine and I knew that weaning was going to be a long road.
I was very surprised when the Doctor said to give him 48 hours. 48 hours?!! Really?!? I was almost excited beyond words but at the same time very sceptical.
On Tuesday, one of the three Doctors at CHEO who can prescribe methodone came by for his daily check in. In his hand was a prescription for methodone with very specific weaning instructions! I could barely believe my eyes! Then he returned a few minutes later with another prescription for Caelan's clonidine. Ok, now this was getting real.
By mid afternoon it was well known through the staff that we were heading home Wednesday. CCAC, the agency that ensured we had all the equipment and support required at home, came by and officially discharged us! That was a huge moment. HUGE.
It did occur to us that with prescriptions in hand there was no real reason for us to stay another night at CHEO. Regardless, we knew the process of actually getting out the door was always a long and slow one and I headed home to get the girls off the bus.
I wasn't home five minutes when Damian called to ask how quickly I could come back because we had the green light to take him home. The girls didn't know what hit them. They got off the bus and were ushered into the van and we were off to bring Caelan home.
We didn't need to rush. Remember how I said getting out was a long slow process? It really is. Three. Hours. Later. We were finally out of there!!
Our boy is far from himself. His weaning of methodone will take until the end of this month and we won't start weaning the clonidine until after that. (thank goodness we didn't have to stay in hospital to do that!!) It feels so good to have him home. We have lots to figure out as everything is different now, but we're happy to do it!
Tuesday, October 4, 2011
Movin' on up!
We we're moved out of the ICU yesterday afternoon and can honestly say we almost miss it. Almost. It's obviously where the money goes in the hospital! My pull out chair/bed last night wasn't nearly as comfortable as the one in the ICU. LOL! We are still very happy to find ourselves finally on the 'recovery' ward, almost a full month after Caelan's initial surgery on September 8th!
Caelan's doing great. We've got a long road ahead of us in getting off all the medications that he's on to help with the withdrawal. In addition, I think we're going to have fun weaning him from TV! I'm anxious to get him playing more. More activity during the day might make him sleep a little more at night, because there isn't much of that going on.
It's an adjustment for me not to have oxygen and suction at the ready. I find myself checking for it and I have to reassure myself that he doesn't need it anymore. Damian and I were talking about when he comes home and how it's going to be so different. First off, how are we going to sleep? There won't be anyone watching Caelan. We're so accustomed to having night nursing I'm not sure either of us will sleep easy for the first little bit... Despite being exhausted from this 'holiday' at CHEO. We're so programmed that you can't go to sleep when Caelan is sleeping.
Getting a little ahead of myself though...
Caelan's doing great. We've got a long road ahead of us in getting off all the medications that he's on to help with the withdrawal. In addition, I think we're going to have fun weaning him from TV! I'm anxious to get him playing more. More activity during the day might make him sleep a little more at night, because there isn't much of that going on.
It's an adjustment for me not to have oxygen and suction at the ready. I find myself checking for it and I have to reassure myself that he doesn't need it anymore. Damian and I were talking about when he comes home and how it's going to be so different. First off, how are we going to sleep? There won't be anyone watching Caelan. We're so accustomed to having night nursing I'm not sure either of us will sleep easy for the first little bit... Despite being exhausted from this 'holiday' at CHEO. We're so programmed that you can't go to sleep when Caelan is sleeping.
Getting a little ahead of myself though...
Monday, October 3, 2011
too small maybe?
Doesn't this kind of remind you of a bad speedo incident you might see at the beach?
Faces have been cut out as to not embarass anyone.
Faces have been cut out as to not embarass anyone.
Sunday, October 2, 2011
Around the corner
Looks like this last procedure did the trick! Caelan has been off c-pap since yesterday and is doing fabulous!! FINALLY!
They were even looking for a bed for him up on the floor, but nothing available. So, for now we're still in the ICU... not for long though!!
Yahoo!!
They were even looking for a bed for him up on the floor, but nothing available. So, for now we're still in the ICU... not for long though!!
Yahoo!!
Saturday, October 1, 2011
afraid
I'm very afraid that my son might have his nights and days mixed up.
He's been asleep a good chunk of the day.
The good news is he hasn't required any extra medication to keep him comfy. Although they did start his fentanyl infusion back up yesterday afternoon when he was upset and not settling. They cut it by half this morning and are talking of turning it off tonight. I'm hoping that I can convince them to hold off until tomorrow morning! All part of my plan to get some sleep here tonight.
I've tried keeping the little rascal awake but when he's tired, he's tired, and he has been through a lot. I'm having a hard time now though since he fell asleep a little over an hour ago and I'd really like him to wake up but it's ingrained in me that you don't wake a sleeping child... but if it means he's not going to sleep tonight, it's ok right?
He's been asleep a good chunk of the day.
The good news is he hasn't required any extra medication to keep him comfy. Although they did start his fentanyl infusion back up yesterday afternoon when he was upset and not settling. They cut it by half this morning and are talking of turning it off tonight. I'm hoping that I can convince them to hold off until tomorrow morning! All part of my plan to get some sleep here tonight.
I've tried keeping the little rascal awake but when he's tired, he's tired, and he has been through a lot. I'm having a hard time now though since he fell asleep a little over an hour ago and I'd really like him to wake up but it's ingrained in me that you don't wake a sleeping child... but if it means he's not going to sleep tonight, it's ok right?
routine
Alarm goes off. I need to wake up the girls, make their lunches, get them ready and on the bus for school.
Then it's my turn to shower and get ready. I prepare lunches for Damian and I, dinner for myself to bring to the hospital and try to remember to take something out of the freezer for Damian and the girls' dinner. I also pack an overnight bag. Whenever I'm ready I head to the hospital to relieve Damian.
When I arrive we usually spend some time together with Caelan. It's our opportunity to review what's going on at the hospital. i.e. How was Caelan's night? What happened in rounds? Any changes? Which doctors came by? What did they say? We also discuss home life. i.e. Do we need milk or other groceries? Laundry? Girls homework status, etc... It's exciting stuff.
I'll spend the rest of the day and the night at the hospital with Caelan while Damian heads home in time to get the girls off the bus. He's got to deal with homework, dinner, baths and bedtime before he collapses into bed himself for a good night's rest.
When he wakes up in the morning his routine follows mine and we trade off again at the hospital. This way we alternate the sleepless nights at CHEO and we both get to see all three kids everyday.
Then the weekend hits and we try to follow the same idea but it's a bit trickier since the girls aren't in school. They've been coming in to see their brother, going on playdates and spending time with grandparents to help us with the shift change.
It's not perfect, but it's what we're doing... ya know... in case you were wondering.
Then it's my turn to shower and get ready. I prepare lunches for Damian and I, dinner for myself to bring to the hospital and try to remember to take something out of the freezer for Damian and the girls' dinner. I also pack an overnight bag. Whenever I'm ready I head to the hospital to relieve Damian.
When I arrive we usually spend some time together with Caelan. It's our opportunity to review what's going on at the hospital. i.e. How was Caelan's night? What happened in rounds? Any changes? Which doctors came by? What did they say? We also discuss home life. i.e. Do we need milk or other groceries? Laundry? Girls homework status, etc... It's exciting stuff.
I'll spend the rest of the day and the night at the hospital with Caelan while Damian heads home in time to get the girls off the bus. He's got to deal with homework, dinner, baths and bedtime before he collapses into bed himself for a good night's rest.
When he wakes up in the morning his routine follows mine and we trade off again at the hospital. This way we alternate the sleepless nights at CHEO and we both get to see all three kids everyday.
Then the weekend hits and we try to follow the same idea but it's a bit trickier since the girls aren't in school. They've been coming in to see their brother, going on playdates and spending time with grandparents to help us with the shift change.
It's not perfect, but it's what we're doing... ya know... in case you were wondering.
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