The last few weeks have been tough. Charlie hasn't really been 'well' since we left the hospital post-g-tube - he always seems to have a fever or be lethargic or vomiting. We have made a few trips to emergency departments - once down to Sick Kids because we thought his side look distended (a sure sign of fluid retention) and once because of his 39.9C fever. Then, early Tuesday morning, things to a turn for a worst.
I heard him around 2:45 quietly whining to himself. This is SO unlike him - he's usually asleep or screaming for me to come in and snuggle. He is not generally whiny. But there he was, on the monitor, whining away. Quietly. To himself. I thought perhaps he had rolled on his g-tube, so I quietly went in, only to be greeted by a pair of wet eyes and outstretched arms. I picked him up and as I did so...saw vomit. Everywhere. With blood in it.
Yes, blood.
I put Charlie down, went and got Matt (who was sleeping with the fan on and wouldn't have been able to hear me had I called) and by the time I got back, Charlie was vomiting MORE (how the child even had any more in his tummy is beyond me, and the realm of science) and panicking in his crib. I held him as he threw up and then went into uber-mom mode. I detached him from his pump, carried him to our room, ran a warn bath and got in the bath with him. By this point, Charlie was so entertained by the fact Mummy and he were getting in the bath in our CLOTHES he forgot about being upset.
Matt called the cardiologist on-call, who eventually directed us down to Sick Kids. I say 'eventually' because he was just a fellow (cardiologist in training) and he had to call the real cardiologist to consult before he could tell us to come. By the time he called us back, we were packed for an overnight and at the door, waiting. We would have been going whether or not he called back.
I set the cruise at 120 km/h and we sailed down to Toronto. There isn't a lot of traffic at 4am. It's lovely.
From there, things were pretty efficient, although I had to get all Mama Bear on the emergency nurses. They were trying to put in an IV into Charlie's very dehydrated, 'flat' veins and couldn't get it in. The poor kid would cry every time they poked him, and then fall asleep between attempts. After two tries, I asked WHY they were putting in an IV. They told me it was 'just in case' he needed fluids later. So, I told them he wouldn't be getting an IV unless he actually needed one, and they could just find someone who KNEW WHAT THEY WERE DOING for the blood draw.
Charlie didn't get an IV, and they found the Vampire Nurse who got blood from his arm, no problem. :S
We ended up spending the night there (so, from 5am Tuesday to noon on Wednesday) but all of Charlie's cultures came back negative. It's been deemed a 'virus' (thanks, specific doctors!) and we're just to ride it out. We also got some of his g-tube healing issues worked out while there, and we also met the new cardiologist follow from Singapore who is LOVELY, and took the time to explain to us how Charlie's Ejection Fraction is measured. We really appreciated his candor and kindness, and the fact he didn't assume we were stupid.
We also found out while there that Charlie's BNP (a hormone variant that informs heart failure) is now in the NORMAL levels. Amazing. It's 72, which is great for someone who has been in heart failure before. When we were admitted last August it was 1100. :(
So, that's the news. I am ready for some major regular-ness. Eating, normal days, healing arms and elbows, and no more drama. Please.
No More Drama - Mary J. Blige
So tired
Tired of all this drama
You go your way
I go my way (no more no more no more)
I wanna be free
(singin)
Broken heart again
Another lesson learned
You better know your friends
Or else you will get burned
Gotta count on me
Cuz i can garuntee that i'll be fine
No more
No more pain (no more pain)
No more pain (no more pain)
No drama, no more in my life (no more drama in my life no ones gonna make me hurt again)
Why'd i play the fool
Go through ups n downs
Knowing all the time
You wouldn't be around
Or maybe i liked the stress
Cuz i was young n restless
But that was long ago
I don't wanna cry no more
No more pain (no more pain x2 )
No more game (no more games messin with my mind)
No drama (no more drama in my life no ones gonna make me hurt again, no more~)
No more tears (no more tears i'm tired of cryin every nite)
No more fears (no more fears i really don't wanna cry)
No drama (no more drama in my life i don't ever wanna hurt again)
Wanna speak ma mind wanna speak ma mind
Uhhhh it feels so good
When you let go
Of all the drama in your life
Now you're free from all the pain
Free from all the games
Free from all the stress
So find your happiness
I don't know
Only god knows where the story ends for me
But i know where the story begins
Its up to us to choose
Whether we win or lose
And i choose to win
Ohhhh...
No more pain (no more~, tired)
No more game (no more games i'm tired, i'm so tired)
No drama (no more x7)
Background Singers : (No More Drama) x4
MJB:NO More
I'm tired of all this drama
Go 'head go 'head
U demons getting out of my face
Go get out of my life
I'm about to lose my mind
NO.....
Help me help me sing
Choir : (NO MORE DRAMA) x6
MJB: No More Drama
No more, no more, uhh. Yeah~
No more, no more drama
Ohh help me sing
I need a (peace of mind x3)
Yeah i need
Hide but nicely i need to know that u r free
Oh nox2
No morex2
No more dramax2
In my in my... life.
Showing posts with label doctors. Show all posts
Showing posts with label doctors. Show all posts
Friday, July 20, 2012
Posted with Blogsy
Saturday, April 28, 2012
The Rainbow Connection
Ug. Blogger made the switch. This is so much more difficult on the iPad now. *Update: bought Blogsy. Am a real blogger now. Much easier from iPad. :D*
Anyways...things have improved since the last post - most things, anyways. We'll begin with the negative...
My brothers surgery, although successful in relieving the pressure on his brain, did not produce the biopsy of the tumour they were hoping for. He spent a week in hospital before being discharged for the weekend, and checked back in last Monday. His neurosurgeon really wanted a sample of the tumour, so they scheduled James for another surgery this past week. The sample of the tumour was recovered, but because of the second surgery, the pressure on his brain increased again, and now they have to put in a shunt. You can read more about this procedure here, if you're interested. So, a third surgery is imminent and my poor brother is bored out of his tree, sitting in a too-small hospital bed for his 6' 4" frame (Mum and I are on that one, don't worry). We are all visiting as much as we can, but for the most part he is just laying, watching tv, staring at the ceiling, and waiting.
So that's the bad news. Not really bad news, as a shunt is a fairly permanent solution to his issue, and the biopsy results have not been returned yet. We are all waiting on pins and needles for those.
The good news:
1. Dad recovered from HIS surgery just fine.
2. Turns out my arm wasn't broken, just a severe sprain with some ligament damage. Because I had it in a sling for so long, it's healed a bit...short, so I can't extend my arm. It aches constantly, so I start physiotherapy this week.
3. Charlie got used to not having me pick him up, and all of the super-helpful guests we had through the house.
4. Charlie's doing great, walking, CRAWLING, and getting into everything.
5. We got a date for Charlie's g-tube. You can read more about g-tubes here, if you're so inclined. We make the Big Switch on May 29th. I still don't know if it's for the best, but it will hopefully be easier and hopefully not permanent. This makes May a very busy month, with meetings at Sick Kids, prepping us in different ways.
6. We are getting our basement finished. Hurray!
It's been an exhausting two weeks. It's not even over for my mum yet, who is driving down to see my brother almost every day. There is a small, growing light at the end of our Medical Week of Nightmares, though, and hopefully it's upon us by next week's entry.
The Rainbow Connection - Kermit the Frog
http://www.youtube.com/watch?v=jSFLZ-MzIhM&feature=youtube_gdata_player
Saturday, March 3, 2012
Happy Birthday
I had just typed out a post about Charlie's birthday as well as some other stuff, and blogger deleted it. Damn it!
Ok. Deep breath. Try again. Before the drip is done.
We are halfway through Charlie's Birthday Weekend Extravaganza. It's going really well - we put a lot of work into decor, food, cakeS (yea, that's right), and presents. He is having a great time, although he does not know what's happening. He does know a lot of people are smiling at him, though, and he is getting new stuff. Very exciting. Today we hosted my family, and tomorrow, we host Matt's. Charlie is being spoiled rotten, just like he should be. He even had a teeny bit of cake and icing, which elicited a gag but not a barf, and thus will be called a success.
We also hosted Charlie's aunt Jen and uncle Craig, and Charlie's future wife Miss Winnie (Gwenyth) today. We had a lovely brunch, and the babies got some interaction/ touch each others faces time. So adorable. Charlie showed off by scooching all the way around the couch and into the kitchen! Impressive.
As for me, I'm actually pretty worried about Charlie right now. I'm not convinced he's gaining weight as he should (two months between hospital weigh-ins is not enough for me!). I had him weighed last week at our doctors office and he was 20lbs, 4oz, about a pound off where I thought he'd be - but then, I honestly can't remember what his last hospital weigh in was, so I don't know where I got the magically new numbers from...I'm also a bit worried because Charlie (mentally prepare for an overshare) peed out a tiny bit of blood overnight on Thursday night. Everyone says not to worry about it (our NPs and cardiologist say since it hasn't repeated, it's not a big deal), but I wonder about his blood thinner levels, or if he has a UTI.mi always wonder if the doctors are missing something...I'm sure I always will.
I think that'd all normal neurotic mom stuff though, now that I read it.
To end on a happy note, Charlie is having some super high-energy days lately, which may correspond to his heart getting better. When transplant kids are healing, they have peaks and valleys of energy because of their new,mimproved oxygen levels. There is a theory that the same thing happens with kids whose hearts are healing. Fingers crossed.
Happy birthday, little man. You are very, very loved.
Happy birthday (who cares who wrote this?)
Happy Birthday to You
Happy Birthday to You
Happy Birthday Dear Charlie
Happy Birthday to You.
From good friends and true,
From old friends and new,
May good luck go with you,
And happiness too.
Ok. Deep breath. Try again. Before the drip is done.
We are halfway through Charlie's Birthday Weekend Extravaganza. It's going really well - we put a lot of work into decor, food, cakeS (yea, that's right), and presents. He is having a great time, although he does not know what's happening. He does know a lot of people are smiling at him, though, and he is getting new stuff. Very exciting. Today we hosted my family, and tomorrow, we host Matt's. Charlie is being spoiled rotten, just like he should be. He even had a teeny bit of cake and icing, which elicited a gag but not a barf, and thus will be called a success.
We also hosted Charlie's aunt Jen and uncle Craig, and Charlie's future wife Miss Winnie (Gwenyth) today. We had a lovely brunch, and the babies got some interaction/ touch each others faces time. So adorable. Charlie showed off by scooching all the way around the couch and into the kitchen! Impressive.
As for me, I'm actually pretty worried about Charlie right now. I'm not convinced he's gaining weight as he should (two months between hospital weigh-ins is not enough for me!). I had him weighed last week at our doctors office and he was 20lbs, 4oz, about a pound off where I thought he'd be - but then, I honestly can't remember what his last hospital weigh in was, so I don't know where I got the magically new numbers from...I'm also a bit worried because Charlie (mentally prepare for an overshare) peed out a tiny bit of blood overnight on Thursday night. Everyone says not to worry about it (our NPs and cardiologist say since it hasn't repeated, it's not a big deal), but I wonder about his blood thinner levels, or if he has a UTI.mi always wonder if the doctors are missing something...I'm sure I always will.
I think that'd all normal neurotic mom stuff though, now that I read it.
To end on a happy note, Charlie is having some super high-energy days lately, which may correspond to his heart getting better. When transplant kids are healing, they have peaks and valleys of energy because of their new,mimproved oxygen levels. There is a theory that the same thing happens with kids whose hearts are healing. Fingers crossed.
Happy birthday, little man. You are very, very loved.
Happy birthday (who cares who wrote this?)
Happy Birthday to You
Happy Birthday to You
Happy Birthday Dear Charlie
Happy Birthday to You.
From good friends and true,
From old friends and new,
May good luck go with you,
And happiness too.
Tuesday, October 4, 2011
Fix You
We've had a few good days in a row. By 'good days' I mean Charlie hasn't barfed since Friday. Yep, non-barf days are good ones. The past couple of days, Charlie's had some trouble pooping, but with three big poops today I'm hoping the strain-days are over.
I've been meaning for a while now to write about the amazing staff at Sick Kids. We had the best nurses and doctors, I think, that OHIP could offer. Below, please find a small list and explanation of each person who touched our lives and affected us so greatly.
Dr. D. - Not to be confused with Dr. A., the moronic pediatrician, Dr. D. is our cardiologist. She is amazing. She is blunt without being harsh and, although sometimes lacking in true compassion, is always willing to listen to our questions and answer them fully without treating us like idiots. Her kids happen to be gifted and thus may end up in Matt's History classes one day, where they automatically earn a 90%.
Kristen & Judith - Our Nurse Practitioners (N.P.s) - Kristen is a lovely little sprite of a woman who makes up for the clinical atmosphere of the hospital (although you can't really fault them on that at Sick Kids, either - the whole place is built around kids, so it's not exactly 'clinical' feeling). She is compassionate, warm, and well-informed on all things cardio and cardiomyopathy. Judith is wonderful, too - she is also warm, compassionate and educated. She answers all of our questions and gives us information we ask for, even when we should't necessarily have it (i.e. last week's EF numbers). I think the role of N.P.s is to take what the doctor says, filter it down to you, and deal with the aftermath. They are there to deal with you on a human level - something that is greatly needed in time like this.
Shelley - my favourite nurse from the cardiac ward. Shelley is like a really nice, popular cheerleader. She has a way of treating Charlie that rivals mine. I'm pretty sure he smiled at her more. She is gorgeous and kind.
Mahalini - Another one of our cardiac nurses, I think Charlie liked her the best. I'm really bad with accents, so it took me a while to get to used to Mahalini's, but once I was used to it, she quickly became one of my favourites on the ward. She wears 'healing beads' and does juice fasts to cleanse herself, and Charlie loved all of her stories and her long, beautiful hair.
Karen - A night cardiac nurse when we were there, Karen look good care of all of us in the beginning days when we were learning about the meds, and the I.V., and the feeding tube, all without complaint and with patience. I appreciate her candor and upbeatness.
...there are too many more staff to mention, including a doctor we have yet to meet (Dr. G.) but have spoken to many times on the phone, and other nurses who have lent a helping hand or been there for the overnight shift. I appreciate all the work they do more then they could ever know.
Today's song is 'Fix You' by Coldplay, because that's exactly what the staff is doing for Charlie.
Fix you - Coldplay
When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?
Lights will guide you home
And ignite your bones
And I will try to fix you
And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you
Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...
Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...
Lights will guide you home
And ignite your bones
And I will try to fix you
I've been meaning for a while now to write about the amazing staff at Sick Kids. We had the best nurses and doctors, I think, that OHIP could offer. Below, please find a small list and explanation of each person who touched our lives and affected us so greatly.
Dr. D. - Not to be confused with Dr. A., the moronic pediatrician, Dr. D. is our cardiologist. She is amazing. She is blunt without being harsh and, although sometimes lacking in true compassion, is always willing to listen to our questions and answer them fully without treating us like idiots. Her kids happen to be gifted and thus may end up in Matt's History classes one day, where they automatically earn a 90%.
Kristen & Judith - Our Nurse Practitioners (N.P.s) - Kristen is a lovely little sprite of a woman who makes up for the clinical atmosphere of the hospital (although you can't really fault them on that at Sick Kids, either - the whole place is built around kids, so it's not exactly 'clinical' feeling). She is compassionate, warm, and well-informed on all things cardio and cardiomyopathy. Judith is wonderful, too - she is also warm, compassionate and educated. She answers all of our questions and gives us information we ask for, even when we should't necessarily have it (i.e. last week's EF numbers). I think the role of N.P.s is to take what the doctor says, filter it down to you, and deal with the aftermath. They are there to deal with you on a human level - something that is greatly needed in time like this.
Shelley - my favourite nurse from the cardiac ward. Shelley is like a really nice, popular cheerleader. She has a way of treating Charlie that rivals mine. I'm pretty sure he smiled at her more. She is gorgeous and kind.
Mahalini - Another one of our cardiac nurses, I think Charlie liked her the best. I'm really bad with accents, so it took me a while to get to used to Mahalini's, but once I was used to it, she quickly became one of my favourites on the ward. She wears 'healing beads' and does juice fasts to cleanse herself, and Charlie loved all of her stories and her long, beautiful hair.
Karen - A night cardiac nurse when we were there, Karen look good care of all of us in the beginning days when we were learning about the meds, and the I.V., and the feeding tube, all without complaint and with patience. I appreciate her candor and upbeatness.
...there are too many more staff to mention, including a doctor we have yet to meet (Dr. G.) but have spoken to many times on the phone, and other nurses who have lent a helping hand or been there for the overnight shift. I appreciate all the work they do more then they could ever know.
Today's song is 'Fix You' by Coldplay, because that's exactly what the staff is doing for Charlie.
Fix you - Coldplay
When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?
Lights will guide you home
And ignite your bones
And I will try to fix you
And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth
Lights will guide you home
And ignite your bones
And I will try to fix you
Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...
Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...
Lights will guide you home
And ignite your bones
And I will try to fix you
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