Tuesday, 29 October 2013

Basking In My Motherhood Perfection...Oops, Guess Not

If you are a reader of the blog (and enjoy it, not just come here for a form of torture) then could you please take a moment to click on the link HERE (The Unique Life of Mr.B) and vote for us?  We are hoping to make it into the top 25 Blogs by October 31st!  Thank you!!!  P.S.  Feel free to share us too :)

I'm not too sure how it happened...I'm hoping I can replicate it again in the near future...but all three boys are in bed asleep at 8:30 at night (unheard of for B).  I wasn't too sure what to do with myself so I thought a compromise of a glass of wine and a new post would go well together!

Diaper hat!

We did it, we escaped and made it home!  Mr.B came home on Sunday afternoon and it's been a few days of transitioning back into life with him at home.  Having him in the hospital for 20 days makes home transition a bit bumpy (for me, not for him).  It doesn't help that in the middle of this Ry's had an allergic reaction that is now going on day three and has been home from school. 

We had another Nursing 'mistake' the day before coming home and so I was just done with hospital living.  It's the first time that we've left the hospital with a sour taste in our mouths and I'm not too thrilled about that.  The Nurse decided to play 'catch up' on B's feeds since she'd been on break and the feed pump had been going off and no one reset it.  Instead of running B's feed at 150mls/hr she bumped it up to 215mls/hr to 'catch up'.  I was stunned when I walked in to find his feed running so fast so I stopped it right away (didn't see his Nurse) and went to chat with the Pediatrician to see what was going on.  Now it might not seem like a big deal but children that are on feeding pumps are on them for a reason, they have a max amount that their little tummies can handle.  B's stomach/gi tract is incredibly sensitive and to essentially slam food into his micro-stomach is awful.  He seemed okay at first and then had a nice retching episode once I got him out of the crib and moving.  This could have been disastrous.  Mr.B was on no monitoring system, and his Nurse was on break.  If he'd started to retch (and essentially turn blue until he gets 'vented' since he can't vomit) he could have easily aspirated on his feed/saliva.  Scary. 
I got this Momma!

I understand (all too well) that mistakes happen but both of his 'mistakes' this stay (trying to give him an oral med and then running the feed too fast) could have been major set backs for him.  Moving on...

And let the crawling Olympics begin!
To say B's happy to be home is an understatement!  He's been so active the past few days, pretty much going non-stop.  I don't think he realizes yet how tiring it can be for him!  Maybe just maybe (yes, I'm actually going to say this out loud) we might be at the beginning of a new sleep cycle??  Back off Murphy, I'm just sayin!

B seems to also be going through a burst of cognitive growth right now as well as physical...it is so very exciting to see!  I was playing 'patty cake' with him the other day and when I stopped he picked up my hand and placed it back onto his to play again.  That may not seem all that significant to you if you have a neurotypical child but for a cognitively impaired child that's HUGE!  Justine continues to work on his 'signs' with him and he's now hand-babbling.  Justine told me that she's  only seen it children with significant hearing before (B's hearing loss is moderate for which he has hearing aides).  He's trying to communicate, that's what I know and I really don't care in what form it happens!  Verbal speech would be great and all but I'm more than thrilled that he wants to sign.  Both of the big boys learned sign language before verbal speech and it was a tremendous help for both Torin (with Autism and mostly non-verbal till 4 1/2) and Rylan (neurotypical).

Little Pooh Bear leaving the hospital!
On top of all of this 'brain' growth B's getting more and more confident with his physical strength.  He's almost at the point where he'll 'sit' (B can't, won't and doesn't' want to sit on his bum) on his haunches without his hands on the ground.  I want to jump up and down just typing this!  It's funny though as I was bathing him tonight I was studying his back (he's got mild scoliosis due to one side of his lower back being 'hyper' and the other side being 'hypo' tonic).  What I noticed is that the appearance of his back hasn't actually changed but he's getting stronger despite this, he's making it work for him.  Did I mention this kid is amazing?

I'm looking forward to having him home again for Halloween this year.  Last year he was discharged on Halloween day (after ironically spending the month of Oct in hospital), so I get to dress him up this year and maybe take him out with the brothers (although we currently have snow, yup, snow).

We are only nine short days until his 2nd Birthday and I wanted to make a video of the photos of the past two years.  I spent FOUR hours on it today and my little video?  It's 12 minutes long...and that's after being pared down twice!  I guess I've got a few photos of this little man!  Back to the drawing board!

Date night with Momma...I love this kid!

It's now 9:30 and the 7 yr old has now been out of bed twice, once for a 'bad dream' and now for a runny nose...guess I'm not the super Mom after all!  Oh well, I think the position would just be far too much work anyhow!  Perfection to me is finishing my glass of wine, possibly having a conversation with this cute guy that we cohabitate with and maybe, just maybe three hours of consecutive sleep!  (Big goals in my life, huge!)

From Our Home (Yes, HOME) To Yours...

Friday, 25 October 2013

Blankie Stories V - A Gift From Heaven

I accidentally created a misunderstanding on B's Facebook page yesterday when I mentioned that he received a "Blankie from Heaven".  What I thought was a simple post had people wondering if we'd lost B.  I am so very sorry to those of you that read that post and interpreted it that way...B is fine, we're still in hospital but he's here with us (I'll write more to this later today). 

Here is the full explanation of what I actually meant.  Grab a tissue because while Mr.B might still be here with us on earth his blankie came from a little one that is not:

I'm already crying so were off to a good start...

A short while ago I wrote a post about a wee little man named Emmitt titled A World Where Children Die.  Proudly this is one of my most viewed posts because what that means is that Emmitt and the Legacy he's left is being viewed around the world.

Emmitt, while so incredibly special, has a family that is just as special.  Emmitt has this Momma Warrior named Ashley who is unlike anyone I've ever met before.  Ashley reached out to me via this Blog and B's Facebook Page because we had shared similar beginnings with our boys.  Ashley also had three boys and we shared many of the same incredible Nurses at the Alberta Children's Hospital's NICU.

When I say that she is unlike anyone I've ever met before is because she has this fire inside of her, it's pretty much unstoppable.  She was an amazing advocate for sweet Emmitt when he was here and she is an astounding advocate for his Legacy.  This is a woman deep in grief but who is still reaching out to others.  This is a woman who had the mindset to not only donate her milk supply but sought out a Momma who is going through cancer treatments while having a wee babe.  Ashley has given comfort and guidance to those of us that still have our children here on this earth while having to go through the indescribable loss of losing her own.

Ashley and I share a connection that is rare where you feel as though you've known someone already a lifetime when you meet.  I am so very thankful to call her my friend and so grateful that she has come into our lives.

While Ashley had asked me if she could bring a blankie to Braeden yesterday I knew it would be very hard for both of us, I also knew how incredibly blessed that would make B.  Ashley arrived yesterday with a beautiful, soft blue blankie with a fringe around it.  It had been one of Emmitt's.

My friends Lorna and Justine were here with us at ACH when Ashley arrived and she gave B the blankie.  I think we all held our breath at the sheer magnitude of what was happening.  I couldn't even look at Ashley, my heart was breaking for her and for the loss that she and her family have had to endure. 

Mr.B (as you can see) thought it was wonderful...he loved it.  He loves that it has holes in it to fit his fingers through and he especially loves the fringe around the outside.  He snuggled right in with it.  Ashley even held B with Emmitt's blankie for a short while...I don't know where she found the courage to do that.  Ashley has given Braeden the ultimate gift, Emmitt's guidance and protection from above.

So you see, it is a "Blankie from Heaven".  It was sweet Emmitt's blankie and now it is Mr.B's treasure.  This cycle of life and these cycles of grief that fit into life are just simply not fair but such beauty can be found in grief and this thing we call Life.

Ashley's words:
"...Emmitt is looking out for B, as he is looking our for me and my family...I have always referred to the poem...'A reason, a season and a lifetime' the blankie is B's for a lifetime."
When someone is in your life for a REASON,
it is usually to meet a need you have expressed.
They have come to assist you through a difficulty;
to provide you with guidance and support;
to aid you physically, emotionally or spiritually.
They may seem like a godsend, and they are.
They are there for the reason you need them to be.

Then, without any wrongdoing on your part or at an inconvenient time,
this person will say or do something to bring the relationship to an end.
Sometimes they die. Sometimes they walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON,
because your turn has come to share, grow or learn.
They bring you an experience of peace or make you laugh.
They may teach you something you have never done.
They usually give you an unbelievable amount of joy.
Believe it. It is real. But only for a season.

LIFETIME relationships teach you lifetime lessons;
things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person,
and put what you have learned to use in all other relationships and areas of your life.
It is said that love is blind but friendship is clairvoyant.

— A poem by Brian Andrew "Drew" Chalker
A Lifetime of memories from Emmitt packed into 20 mths and 8 days
Thank you for being a part of our journey with Mr.B,
whether you are here for a Reason, a  Season or a Lifetime.
From Our (Unit 2) Home To Yours...

Wednesday, 23 October 2013

How Strong Are You?

I've been ruminating on this topic in my head for awhile now but sometimes it is hard to get the words from my heart, to my brain and out so bear with me.  Again, I will point out that I write this blog for me, to get all the voices in my head out!  Not one of my 'typical' posts but I hope that you'll make it to the end anyhow!

So much of our journey in the past 23mths has been about strength, Braeden's strength.  I've heard countless times people telling me how 'strong' I am.  I have to be honest with you, I don't feel 'strong' I feel often overwhelmed and underwater.  I often second guess myself and my decisions (with the care of all of my children).  I often feel 'bogged down' and unsure, not at all the 'strong' person people make me out to be.  But today, that needs to change.

What is strong?  What is true strength?

Websters says:


noun \ˈstreŋ(k)th, ˈstren(t)th\
: the quality or state of being physically strong

: the ability to resist being moved or broken by a force

: the quality that allows someone to deal with problems in a determined and effective way

Looking at Webster's definition then yes, I can see how some might view me that way.  I can certainly attest to dealing with problems in a determined way but I'm certainly not always effective (or able to remove my emotions from the picture)!

But let me tell you for a moment what the secret to my 'strength' is...my strength is Braeden, it's Torin, it's Rylan and it's most certainly Michael.  While I draw and observe so much strength from all of my male loves, Mr.B is strength personified to all of us here at the Lousier-Hicks household.  Here is a child who has endured more pain, more testing, more suffering (in less then 2 years of life) then anyone should have to in a life time AND he does it with a smile.  He always bounces back, he always forgives and he always loves unconditionally, period.  How can one not be inspired and pull some strength from that?

What else is strength to me?

I have a wonderful friend going through a hard time right now coming to terms with the death of her father (it's the anniversary soon) and is reviewing her own existence so to speak.  I find this incredibly strong, I find people that can look at themselves and be vulnerable for the world to view so very strong.  Being vulnerable to others, not just to ourselves is a picture of strength in and of itself to me.

I had an amazing and incredibly emotional evening last night where I was able to sit down with three other Moms.  These are other ACH Moms, other 'warriors' (please note that I think anyone who becomes a parent and advocates for their child is a 'warrior', special needs or not), Mom's with children with immeasurable strength.  We all have our own stories and we all have our similarities but what I got most out of our conversation were our differences.  I don't mean this in a bad way at all but in celebration.  I think (and I'm speaking for all of us here) that we all view each other as 'strong'. 

Do I have more strength then my friend who is intensely private and protects herself and her child from the world?  Certainly not.  I respect her choices and I respect that she is such a fierce advocate for her child. 

Am I in any way stronger then the Mom who is just starting out her journey at ACH?  Not at all, in fact this Mom's strength and perseverance thus far is amazing to me!

What really hit home for me last night (and by hit home I mean I have cried more tears in the past 12 hours then I have in the past 12 mths) is when our third friend shared her journey that has ended with the death of her child.  Her (their) journey is not over, not by a long shot but she has lost her child and yet she came to speak to us.  She blessed us with the knowledge of what courage means, what perseverance and drive means and here it is folks, what true strength means:

True strength is never giving up but knowing when it's time to let go.

Now this is an extreme circumstance for this, I realize that but isn't it true in all of our lives?  Isn't this true in every decision we might have to make??

How many times in our lives have we had to learn the life lesson of just 'letting go' of something or someone?  It is one of the hardest life lessons by far to learn (and we generally have to learn it many, many times).

Am I a stronger person then you because I'm on this crazy journey of my life?  No, no I'm not.  You are so very strong.  You need to look at yourself in the mirror and say, "I'm the strongest person I know".  Strength doesn't mean we're perfect, far from it.  Inner strength doesn't mean you've got the body you want or maybe even the life you want but guess what folks?  You're HERE, you and you alone have survived your own journey thus far.  You woke up this morning and you got out of bed (or maybe you're still working on getting out of bed, that's okay too).  You, my friend are strength personified in your own individual way.

You might think my life has more complexities then yours, that your 'issues' aren't as big compared to mine but note they are yours.  I often hear from people, "Well, I shouldn't complain, you're life is much harder then mine".  Our 'problems' in life are relevant in the life we each lead.  Our stories all have relevance and let's face it, life can get us down.  It doesn't mean that anyone is stronger then you, it just means that you are letting yourself feel and through that hopefully healing even a small amount.

Stop for a minute and consider what you've overcome in this life of yours...not what I've overcome or even Mr.B but YOU.  You, your gorgeous, less then perfect self.  Isn't it amazing?  Aren't YOU amazing?  Say it again, "I'm the strongest person I know, look at what I've overcome".  Watching others around you and admiring their strength is only part of the puzzle, we all need to admire our own strengths more often (myself included, I realize I'm calling the kettle black here!).

We're all survivors in the thing called Life.  We're all strong in our own way and we all have strengths that others may envy or respect.  We are who we are.

I'm thrilled that so many people can be inspired by Mr.B and I'm so very happy that people get to see his strength, joy and love that he offers.

True strength is never giving up but it is knowing when it's time let go.

From Our Home (and my never-ending thoughts) To Yours...

Saturday, 19 October 2013

The Irony of Mr.B's Life

Last night I had one heck of a nightmare.  A wake in a cold sweat, scream my head off nightmare.  Ironically (?) it was my first ever Braeden nightmare, which I'm certainly not as stressed about B as I have been in the past.  The dream was awful (no surprise there, it was a nightmare) and I don't need a Psych degree to let me know that my stress level is peaking a bit high these days. 

I had left Mr.B alone with the big boys (which would never happen, they are 7 and 8 after all), and when I came back to check on him they told me he was gone.  Just gone, they weren't really concerned, just turned to me and said "he's gone Mom".   I flew into a panic looking for him and tried repeatedly to call 911 but couldn't get my phone to work.  The big boys couldn't quite grasp why I was so upset.  I ended up running all through a mall looking for him and finally collapsed in a heap on the floor in sobs.   I opened my eyes and looked across from me and there was one of his blankies on the floor.  I grabbed at the blankie and there was his smiling face looking at me, just laying there.  I was so relieved to see him until I realized he wasn't moving which is when I woke myself up screaming for someone to get him fluids.

It's interesting to me that B's not really that 'sick' right now and yet I'm feeling very overwhelmed with it all.  Not overwhelmed with him in the moment but overwhelmed with the future and what it will bring.  Sometimes it would be so much easier to bury my head in the sand and just go along day to day.  It's not even something that I can even put a name to, just a feeling of something bigger in our path.  There are so many positives surrounding us each and every day but I'm getting drawn into the negatives and sometimes it's just that much harder to go to the positives.  I think really, it's the frustration of the 'unknown' and that I keep hearing 'you need to let it go' when I am feeling that something is not right.

I certainly didn't have a great sleep but Mr.B had a much worse start to his day then I did.  B managed to somehow 'break' off his catheter...how, I don't know.  Thankfully it was an external break and he didn't damage himself in the process!  What it did mean though was that he needed the current catheter out and a new one put in.  Nurse Carissa (who is a great Nurse), said they only gave it two tries and didn't push it.  No go on the second catheter.  The consulted Nephrology and enquired if they could just bag him for the remainder on the test and they agreed that would be suffice.  Of course I'm not sure if B agrees that it is any better since he's got a plastic baggy taped to him to collect all of his urine and it has to be changed regularly.  Rip, to take it off, and stick to get it on...repeat.

It would be completely understandable then that the poor kid decided not to pee today.  I'm not sure if it was just that he was sore, or too scared it would hurt but he decided to give us all a bit of a scare when he didn't output anything into the first bag for 6 hours.

Of course what we didn't plan on with the 'bagging' is that Mr.B decided that he was going to be having awful stooling to go with it (hope you're not queasy!).  The first diaper I went to change this afternoon I opened and groaned, green slime.  The good news was that he'd finally peed a bit but the not so good news was now it appears that he might have picked up Rotovirus or such.  Nope, no easy road in this kid's life.

I also found out, by chance, when I changed him that he had a bandaid on his arm.  My first thought was, "oh no, they poked him by accident!".  I was more then a little annoyed to find out 1) he'd had blood work, 2) no one had bothered to even inform me (or ask) about it, 3) I wasn't here to at least hold his hand or try to distract him.  It turns out that Nephrology had ordered it for a comparison against the urine samples but the Resident didn't mention a word of it to me last night when we talked.  Annoyed.

Let's recap his day:
-Broken catheter
-2 attempts at reinsertion of a new catheter
-Having to be repeatedly taped and removed on the most sensitive area of his body
-Blood work (I don't even know how many pokes it took, I am telling myself it was only one good poke)
-Crazy diarrhea and upset tummy
-AND his Momma took off the heart monitor tapes off his sensitive skin (off his chest)

The most amazing thing (why this surprises me I don't
know), Mr.B smiles.  He didn't smile through the torture of his day but he did smile in between and he did go to sleep tonight a happy, content boy in my arms.  I'm ready for a drink and my sweet boy goes to bed smiling.

The question tomorrow will be just how 'sick' he is (with the addition of whatever virus this is) and if he will be able to tolerate his morning feed.  He was certainly gagging a bit in the tub tonight and all he had in his tummy was water.  I'm thinking positively (aren't you proud of me?) and keeping my fingers crossed we can still bring him home tomorrow.

It's getting too much for the boys, they need me, and B needs me.  Somewhere in the midst of all of that it would be nice to see that handsome man I call my Husband too (who is horribly sick with his own virus and working 7 days a week).  I can see the stress of it all show on Torin especially when he crawls into my bed in the morning and tells me how much he missed me.  He tells me that he would really rather sleep in my bed so he knows right when I get home so that he can have a better sleep.

The boys came with me up to ACH today and it was thankfully a day the Art Studio was open (for patients and siblings).  I was happy thinking that I could engage them for two hours and have two hours with B but Torin was having none of it.  Rylan was excited to 'create' something since they were painting ceramics today but T was almost in tears when I was gently prodding him to stay for the class.  I asked what was going on and he told me that he didn't want to stay away from B.  He's been missing B so much that he had no desire to be apart from him...my sensitive boys.  Now of course an hour later (when B had fallen asleep and Torin had to be quiet) he was driving me nuts wanting to leave.  It's all relative! 

Pretty sure this is one of my new favourite shots!  LOVE!

What's the plan?  No plan at this point.  The hope is to bring B home tomorrow and that this 'virus' is a short term thing that can just be managed at home.  It will be another few days before Nephrology gets the results of the urine collection/blood work and from a 'pain' standpoint nothing has really changed.  The ironic thing might be that Neph wants a closer look at the cyst in the kidney and orders a CT scan...ironic to say the least.
From Our Home (Unit 2) To Yours...

Possible Kidney Stones, Heart Surgery and More

I should start by saying I'm tired, I generally don't post the most positive of posts when I'm tired.  When I say "I'm tired" what I mean is that I'm actually more tired then usual, which isn't saying much.

Hangin with Daddy
It's been another long week and life in hospital, while not so bad, it is exhausting.  My days generally consist of getting up, getting the big boys up and ready for school (making lunches, barking at them to hurry up, etc), dropping them at school (apologizing for barking at them), heading straight into the hospital where I'll spend the next 6 or so hours with B.  Then back to pick up the big boys, take them home, get snacks, get Torin ready if it's a 'therapy' day, make dinner, feed said children and get them into bed (hopefully without further 'barking') all so that I can rush back to the hospital to put B to bed and spend another 3-5hrs with him. I'd like to say it all goes 'smoothly' since we're on a bit of a schedule but really it's exhausting.  There are days when B sleeps at 6pm (from boredom mostly) and is up until midnight partying (like now). Mr.B also knows that when he falls asleep his Momma sneaks out shortly afterwards (unless blogging to download of course) to sneak in and kiss my other children so that they might have sweet dreams knowing that their Momma is home and there for them too.  Like I said, exhausting.

Then again I guess it's really just a 'different' type of exhausting because when B is home and I'm getting no sleep it isn't much better, just different.

Hospital room races!
Alas, I'm not writing tonight to complain, just to let you know that I'm not in the most positive frame of mind.  It also doesn't help that I got hit with (what I assume was) food poisoning Wednesday and Michael has (again what I assume) is Bronchitis and is still having to work 7 days a week 10-12 hr days.

It's been a busy week of tests for B and there are still a few more to finish before we can go home.  It was looking at the beginning of the week that we would head home Weds/Thurs then it got pushed to Friday, then Saturday and now (hopefully) Sunday.

It was a rough start tot he week having to bring B back into 
Such love!  Ry and Miss Araya
hospital after taking him home for Monday.  I didn't even get fully parked before Mr.B was in a fit of tears, knowing he was coming back in.  He may not be vocal but he knows what's going on around him!  B got called for his abdominal ultrasound first thing on Tues morning (as we walked onto the floor) but somehow it was missed that he needed to be NPO (off food) for at least 5 hours before the test.  I stopped the feed that was running and we went down at 1pm instead. 

While we were waiting for the ultrasound (and of course right when B went down for a nap) they came in to do an EKG (heart reading).  Mr.B trouped through it although he wasn't impressed.  I was dreading the abdominal ultrasound since he'd already endured the EKG and was unimpressed.

Mr.B was amazing during the ultrasound, and the tech was
Big Brother lovin' for Thanksgiving
great as well (the DI group has some fantastic techs here).  I read 'Going on a Bear Hunt', B's favourite story book (that is getting very worn out from hospital stays).  To say I'm a little animated when I read would be an understatement (gotta love majoring in Theatre).  I was (amazingly) able to keep him pretty entertained and the tech was thrilled with the amount of pictures she was able to get.  I knew she'd had a good look at his liver and a great look at the kidneys so I was happy that we'd gotten it done.  The question of course was whether or not she'd been able to see those lovely intestines in question...ready for it? Nope.  Not really, there was too much gas in them and she couldn't get a great view of any of his intestines....sigh.

The good news was that the EKG looked good (not that I was expecting otherwise) and that she did get a good look at the kidneys.
So happy to be in the sunshine with his own toys for the day

A short history of Mr.B's kidneys is that we know he has multiple cysts in his kidneys (poly cystic kidneys) which are most likely another one of his 'genetic quirks' since they don't run in either of our families.  B's kidneys have also had a good workout in their short life because they had pretty much 'shut down' when he was septic and we were literally discussing dialysis (and how much medical intervention we would do) when they sluggishly gave it another go.

Nephrology has been following him quite closely since birth and the last time we saw them (a few months ago) there was nothing too new to report.  He's had chronic UTI's in the past as well but those have also (knock on wood) been under control now for awhile (he's also been on antibiotics prophylactically for the prevention of UTI's for almost his whole life).

Needless to say the ultrasound to 'look at the intestines' found a 'thickening' in one of the cysts in B's kidney.  What does this mean? Right now we don't have much of an answer.  The preliminary thought is that it is calcification in the cyst and that it could be that Mr.B is letting go of small kidney stones (hence the intermittent pain episodes).  Could this be our answer??  Who knows.

Nephrology decided to do a 24hr catheter to collect a 24hr sample of his urine to test for minerals (calcium and such).  So last night I got the pleasure of holding B down while they put the catheter in (after a few shots).  For those of you that have either never had a catheter or haven't seen one, they are actually quite large and cumbersome (when you're almost two and wanting to move).  B's making do, as B does but it is certainly in the way.  I kept telling him it was only for 24 hrs so that it wasn't a big deal.  The Neph Resident came in to chat with me today and actually informed me that they want 48hrs of urine now, not the original 24.  Okaaay.  I explained to him my concern that the last time B had a 24 hr catheter that they could NOT get it out, he'd built up 'crystals' around it.  The Urologist that finally got it out (by brute force) was amazed that anyone could form crystals that fast.  The Resident asked me if I wanted to take this one out (after the 24 hrs) and put a new one in....um, no, let's not torture him anymore then needed thanks.  It is good to just 'get er done'   since we're here.

Mr.B also got his Echocardiogram today as well (heart ultrasound).  The short background history on B's heart I
Figuring out all the tricks of the hospital cribs
s that he had heart surgery at 22 days old for a Coarctation (which is a narrowing of the Aorta).  We knew after the surgery that he still had a mild PDA (leaky area essentially) and Dr.Fruitman (Cardiologist) has been watching it.  The Echo looked good today from a Coarc standpoint (repair looks good) and it is okay from the PDA standpoint but it's not getting any better.  It's not worse (which is a very good thing) but the decision needs to be made when to repair it.  It needs to be done since it won't 'close' on it's own to prevent possibly major issues down the road (like congestive heart failure).  The choice is usually made to close them by age 2-3 but Dr.F wants to give him another 6 mths since he's been having so many other issues.

B's favourite pastime!
It should be a pretty straight forward procedure that they can hopefully do through his groin and not have to open his chest up again.  The thought of another heart surgery, even a small one is still pretty daunting.  It means another trip up to Stollery Hospital in Edmonton (Calgary is the Neuro hospital and Edmonton is the Heart hospital) and if you remember (or don't know) it was after his last heart surgery that he went septic and almost died due to the complications.  A little daunting.

I also got a call today in regards to B's eye surgery (he needs a
dual eye lift for his upper lids, again genetic quirk).  She said she had two dates for me, December 13th (Michael's 40th Birthday) or December 30th (My Birthday)...what kind of joke is that??  I opted for the 30th since it is Mike's 40th after all and it would be nice to still be able to have the party I've been planning in my head for him.  Such wonderful birthday presents she offered us!  365 days in the year and the only days to chose from are our Birthdays.  He is still however on the cancellation list so the hope is that they'll actually fit him into November's calendar instead.  The hope is also for Dental to come on board for that surgery and do a teeth cleaning for B too.  Buy one get one free kind of deal.

Chase the face cloth is the best game going!
Looks like we're in for another busy year, not that I would expect any less.  The upcoming eye surgery, the possibility of a kidney procedure and the pending heart surgery...fun.  Not to mention that we still don't really know anymore about B's pain/feeding issues.

The exciting (bear with me here, I'm not sadistic I swear) thing is that B had a 'pain' episode tonight by the sounds of it.  I wasn't here and he was with a new Nurse but what she described sure sounded like what I see at home.  Two weeks of being here and he might have finally shown someone an 'episode'.  His Nurse commented that he was beyond upset and that if she couldn't get him to settle she was going to actually call me.  So I'm 'glad' that she saw it happen and I'm 'glad' that it will be documented but I'm not at all happy that my poor boy was in pain and miserable.

Irony anyone?  It is FRIDAY night...why do these things always happen on Friday nights (when most Emerge trips happen)?  It's never like, hey it's Monday morning, let's shake things up!!  I guess he does have a full moon on his side tonight as well.  The good news is that I didn't take him home today and watch him have his first 'big' episode in two weeks at home (I'd be banging my head against a wall for sure).

The other excitement (not) around here is that B's g-tube was bleeding quite a bit tonight, oddly so.  It was seemingly coming from 'around' the tube itself (from inside the stomach or port?).  That's new, and not too great to see.  I have NO idea why that could possibly be but we'll have the g-tube Nurses take a look tomorrow and see what the heck could be causing it.

We still may not have a good view of the intestines but in true B fashion we've managed to uncover a possible kidney issue and unresolved heart issue...double sigh.  Oh this kid.

We will see what the next 24 hrs bring since we still need to be here for the catheter and see what Nephrology thinks the next move is.  It is seemingly going to be an 'exciting' end to our year.

From Our (Unit 2) Home To Yours...

Sunday, 13 October 2013

So Much To Be Thankful For

How it has happened that Fall is now upon us and the leaves have all turned is beyond me!

Gazing out Mr.B's Hospital room window is a sight to see
with the Mountains on the horizon and the leaves all the colours of fall.  I am amazed that Thanksgiving is already here and now winter will soon be upon us.

Today is a day of Thanks and do we ever have many of those.  I try very hard to thank the people that make a difference in our lives each day as we go along but I know that I don't always succeed.  Saying 'Thank you' may seem like such a small thing but to the person being thanked it might mean the world.

I am currently in B's room, listening to him sleep and thinking of all of the amazing and wonderful people that have come into our lives because of Braeden, his strength and his love. I am so very... thankful each and every one of you.  For all of you that have followed our story from the beginning and for those of you that have just joined in the fun.  It blows my mind when I see where in the world Mr.B's story is being read!  I'm thankful to those of you that are also following us on Facebook and sharing positivity the world around!

I am beyond thankful and grateful for all of the staff/volunteers here at Alberta Children's Hospital, you make 'living' here bearable and even fun.

We have also been continually blessed with all of our Aides, Therapists and Homecare workers (current and past for both T and B) which by proxy become honorary family members! Such amazing women and men!

I would also like to thank my family, friends, neighbours and fellow ACH families...you have continually lifted us up when we've felt so weighed down.

I am also very thankful that we live in this great Country with Healthcare and Funding for Disabilities. I know I might gripe about our difficulties at times but I also know how very fortunate we are to be where we are! Thank you Alberta, and thank you Canada!

While this journey may be about our little Family it is really so much more.  Without the love, support and kindness of others our story would be so much less (and I might be rocking in a corner somewhere).  You are all a part of our story and a part of our journey.

The great outdoors escape!  Guess we could've taken his toe probe off...

It's been a bit of a long and rough week here at ACH.  Mr.B's been great, he's settled back into 'hospital' living which I guess is a good thing.  He's so used to being here that I think he just thinks this is his/our second home.  Some might have a vacation property...we've got ACH (and Rotary Flames House, which is kinda like a vacation property).  I had a busy week of meetings and appointments so Justine thankfully was able to be here with B each day.

Justine getting into the 'grit' of her job! :)
Mr.B had an appointment with Dr.Brindle (surgeon) on Wednesday so I walked over to cancel it since he's an inpatient (and she's one of the Dr's to bring him in) and asked if I could just see her instead.  Her gracious staff asked and I to use B's appointment to chat with her.  We hashed out what has been going on and I voiced my concern that we're 'missing something'.  Dr.B agreed that there might be more to B then meets the eye (he's proved that time and time again) and she did stress there is nothing 'symptomatic' about the way he's presenting.  She did go on to say that with B we just never know, there could be something completely asymptomatic that he's trying to tell us.  I told her that now that's it's been going on for six months that I would be asking for a CT scan to at least rule out all of the 'physical'.  I just felt that we'd been treating (trying) his gut for all of these issues but we'd never really taken a good look inside.

I went on the explain that I didn't want to expose him to more (unnecessary) radiation but that I couldn't possibly watch another six months of this with no answers.  Mr.B still weighs less then he did six months ago.  His weight comes up, he stops being able to handle food, weight goes down and on and on goes this cycle.  Dr.B agreed that a CT might be warranted at this point since we'd been coming up empty for awhile now.  We also chatted about the possibility of going back to a NG or even NJ (through the nose and down the back of the throat into the stomach or small bowel) tube if necessary.  Neither of those would be ideal since I'd have to replace them several times a day (he's been known to rip them out on more than one occasion).  I left her office feeling good, we had a plan of action.
Learning new things!

I finally got a chance to see his Pediatrician (on rotation) that afternoon as well (since I'd not exactly been easy to find earlier in the week).  I was feeling good about everything and then we talked.  Dr.MacNeil (who was B's first ever Pediatrician here on Unit 2 so she knows him well) told me that she couldn't see how we could warrant a CT at this time.  A CT scan needs to be ordered to find a specific problem and we couldn't order one to 'just look and see' like I wanted. 

Dr.M also went on to say that she isn't convinced that this is something physical at all but instead believes that it is actually Neurological.  I explained that I could believe with 100% certainty that it could in fact be Neuro (we know B's brain is a 'Braeden brain' and small in size) but that I really felt the need to rule out the physical first.  Dr.M said that the risk of a CT was just so much higher then the possible outcome.  She also went on to explain that I might need to let go of finding a 'reason' for all of this.  We just may not find one.  I'm just not satisfied with hearing that 'it just might be Braeden' after six months of this.  Dr.M explained that B might just never get back to what he was eating before (250ml/hr vs only 150ml/hr now) and that that's okay.  She assured me that maybe we just need to look forward, not behind us and accept what he can eat and move forward with that. 

Dr.M also explained that the sleep 'issues' were also pretty typical for B's age/development and that we weren't really needing to take those into account for the GI issues.  We kind of went around and around and when she left I was more confused then not.

B's favourite position these days is on his knees in his ACH window
For those of you not sure how this could be Neuro, the gut has more nerves in it then even the brain and is in many ways more complex, and therefore even more of a mystery, then the brain.  If the neurological pathways of the gut aren't being communicated to properly (or communicating back) then an issue arises.  Could all of this be in fact Neuro?  For sure.  BUT could it also be something else that is physical?  I think so.

The other frustrating part for me was that GI hadn't been called to weigh in on all of this as well.  I felt that they should in the bare minimum weigh in with their opinions.

A wonderful surprise visit from "Auntie" Trish, B's NICU Primary Nurse
As I drove to pick up the boys from school I just burst into tears.  My main thought was why are we even in hospital then?  Why risk putting B at risk for all the viruses floating through these halls if we are just going to decide 'it's B'.  I fully respect Dr.M and I fully got what she was saying BUT I couldn't seem to let it go.  The thought of yet another 'unexplained' issue with B was just too much.

Braeden is SO complex, such a mystery, and so confusing!  I know that he's got Dr's scratching their heads but why, just once, couldn't I have a straight forward answer.  Did I really think they would find something on the CT?  The easy answer is no, I didn't.  So why, WHY did I feel the need to push for one?  I just was/am scared to think that in another six months we'll finally do a CT and find something that could have been seen/treated/dealt with now.

Sterile water is fascinating!
I came in on Thursday really thinking that maybe it would just be in all of our interests to take him home.  I hate to be here in hospital taking up a bed trying to see if we can catch one of his 'pain' episodes.  It is pretty much impossible to replicate home life here in ACH because B is so much more limited in what/where he can do/go.  When B has his bouts of (what I believe to be) intestinal spasms he is generally either having his food pushed too fast (which we're not changing here at the hospital) or he's been doing too much (which isn't really possible here either). 

Goofball Rylan
Justine and I have been trying to mimic home life as much as possible but I also found out (after agreeing to come back in) that B still needs to be on isolation for his VRE (super bug from his stay in here almost a year ago now).  I was so surprised because I was told that if you got three negative (anal swabs) then he'd be 'cleared' off isolation.  We had his third swab completed on his last admittance and it had come back in clear.  Three clear, yay!  Or not.  I guess what happened is that each time they swabbed him he was on antibiotics and therefore they were not allowed as a true negative.  Just a little frustrating!!  Being on isolation also means that he can't go to the playrooms (and therefore get more exercise like at home).

Of course B's been 'perfect' since coming in almost a week ago.  He's even sleeping well at night (which I have my own theory about).

Our meeting Thursday also included Dr.Volmiero and she re-confirmed what Dr.M had said about the unnecessary risk of the CT scan.

Happy big brother T, he's missing B something awful
Friday we came to a compromise and are going to do an ultrasound of the abdomen next week.  Dr.V and Dr.M both said that they can certainly see all that they need to on an ultrasound.  We've also started B on canola oil as a fat supplement to get his weight and calories up.  I was more than a little hesitant to trial anything new since the last two trials didn't go all that well but Dr.M had a good point that if we trial it while in here everything is documented.  So we are now on day three of that and so far so good but I am keeping a close eye on whether or not we're in for yet another round of constipation with this new addition.

Saturday was not a good day, in fact it was a no good, very bad day for Momma.  I'm not by nature a confrontational person and in fact I'll avoid conflict in my own life if I can but when it comes to my kids the gloves come off.  I came in on Saturday morning and B had a new Nurse (which is fine) and when she was going over what had gone on during her shift thus far she mentioned that she'd given B a bath.  My response was "Great!  He loves having a bath."  She gave me a funny look and said that he really didn't enjoy it at all.  I thought that was odd and then realized probably what had happened so I asked if she'd tried to make him 'sit' in a bath.  She replied that yes, she'd 'sat' him in the bath, it didn't go well so he had a pretty short bath.  I was a little stunned that she didn't know that B can't sit.  Can't sit, won't sit and has NO desire to sit.  Now I can let that one go, people see B crawling and moving so I can see how one would 'assume' that he could in fact sit.

Then as we were chatting she asked if there was a secret to giving B his drops.  I inquired about what drops she was asking about and she showed me his probiotic drops.  I said, "No, no secret to them" and she said, "Oh, I couldn't get him to keep his mouth open to take them".....Oh dear lord, please tell me she did not try to give my 100% g-tube child oral medication...."So, um, to get this straight, you tried to give him his probiotics orally??"  Her answer, "yeah, the order wasn't really clear, it says to give 5 drops by g-tube but we can't just put drops in his g-tube."  "Well, you could certainly have put them in his formula...you know he's 100% g-tube fed right?!"  GAK!!!!  This, this is not okay!!  Now you might think that I was over reacting but I was not and I'll explain why this is such a big deal for three major reasons.

1) B has a massive oral aversion that we've been trying to introduce positivity around his mouth with gentle touches and such each day.   The fact that she tried to pry his mouth open to give him something foreign would have been a huge step back for him.

2) If (and I imagine she didn't actually get any in his mouth since he would have shut down like a steel trap for trying), if she had gotten some drops in he would have been screaming and fighting her tooth and nail and his chance of aspiration would have been huge.  It doesn't take much to aspirate and I'm pretty sure a probiotic in the lung would have some pretty serious consequences.

This is why I had to have a good cry afterwards:

3) Justine and I have worked SO hard to try to make this hospital stay a positive experience for Mr.B.  Braeden knows all about cause and effect now and it is getting increasingly difficult to get him into any of his appointments without a major meltdown as (cause and effect) he thinks it's going to hurt.  All of our careful planning and reinforcement would have been gone the minute she came at him orally.  Breaks my heart.

As I said, I'm not a complainer, nor am I much of a pot-stirrer but man was I MAD.  I actually had to play with B for two hours just to calm down enough to make my complaint.  I did inform his weekend Pediatrician as well as both of the Charge Nurses on the floor of what had happened.  I made it clear that she wasn't welcome in B's room anymore (I've NEVER done that before in almost 2 years).  Generally in the past when mistakes have been made I've not heard about them until afterwards so this time it was a shock.  The saddest part of it, I'm pretty sure she didn't/doesn't understand why I was so upset by this.

Daddy time
The good that did come out of it was that I realized that I've become too complacent in B's care, I can't assume all that have him will know him.  I've also realized that his 'care plan' that a new Nurse will go over before having him needed to be updated.  B now has a nice blue sign in his room that is the "FYI's of caring for Mr.B".  I feel badly for the Nurse in the sense that she didn't see the harm she was doing and learn from it BUT to not question something she didn't quite understand or comprehend is inexcusable in my opinion.  Of course, Murphy's Law, she was the first face I saw when I came onto the Unit today!

Anyhow, we are moving on.  It happened, stuff happens here, we're all human.  Moving forward.

Since tomorrow is a holiday Monday we're probably not looking at getting B's ultrasound until at least Tuesday at the earliest.  We also get to see Dr.Fruitman (B's Cardiologist) this week which I'm looking forward to, not just because we love her but also because I know B's heart is strong!

The assumption is that we'll be here for most of next week as well to do a good trial with the canola oil before going home on it.  Since we're in hospital B will also get his inoculations up to date on Wednesday.

Moving on!
Amazing friends (and they're pretty funny too!)

Today is Thanksgiving after all and we've got very much to be thankful for.  We had numerous invites over for Thanksgiving feasts but I'm cooking our own dinner tomorrow to have some normalcy for the big boys.  We did however receive some amazing pies today though!  Thank you Sumyu and Lisa for the pie deliveries as well as a huge thank you to Jodi and Kelly for cooking us all dinner two nights last week.  As I've mentioned, we are blessed.

but most of all,

Happy Thanksgiving All! Thank you for your continued positive thoughts and comments for us!
The countdown to 2 is on!!!

From Our (Unit 2) Home To Yours....