Monday, 7 October 2013

A World Where Children Die

We had a pretty typical week this week until we hit Wednesday and Mr.B decided to shake things up a bit. 

Wednesday morning I actually introduced B to his first dose of coconut oil (2mls) to see if we could have better luck with an easier 'fat'.  I  flushed him afterwards with 30mls of water and felt confident that his tube was clear.  Justine was at another appointment and wasn't here with us so I packed all three boys up to drop the big boys off at school (I had already forgotten after a month with Justine how much work that is!).  

B and I got home and I got his morning feed ready for him and put him in his tumble form chair (therapy chair).  He instantly began to freak out, and I don't use the words 'freak out' lightly.  I tried to settle him down in the chair and he just continued to escalate.  I pulled him out of the chair and held him close, trying to off some comfort while being completely bewildered myself at this 'new' B.  He cried and cried in my arms and then started his 'crunching' in pain (he crunches down like trying to get into the fetal position from, what I believe is, stomach pains).  He just kept screaming and crying and looking at me as if to say, "why can't you stop this?".  I tried venting him (in order for B to 'burp' I need to open his g-tube and pull any air out) and got back almost all of the water I'd flushed him with (it had been in his stomach for an hour at this point).  I didn't think much of it at the time but kept in mind the coconut oil so I threw out whatever came out of his stomach to try to offer some relief. 

After this went on for 1/2 hour with him starting to calm and then full out screaming again, I started to completely lose it myself and considered calling 911 (Emergency line).  I kept telling him over and over that I would take him into the hospital but he needed to calm down first.  My thought to call 911 was because he wasn't getting much air as he was in such discomfort and I knew I couldn't put him in his carseat like that.

I called Michael (my poor husband) and promptly burst into tears when he answered (which is the phone call that any husband would love to have).  I explained what was happening and he encouraged me to take him in (to the hospital) while we both speculated on what the heck could be wrong. 

While I was talking to Michael, B had pretty much calmed down (aside from the gasping breaths) and put his thumb in his mouth.  I realized that he'd tired himself out so I asked him if he wanted to go to bed and he happily let me lay him down with his blankies.  I let him sleep since he'd obviously tired himself out and was not screaming anymore.  (For those of you that are concerned that I didn't take him in right away please note that I did my best to palpitate his tummy in his 'calm' moments and found nothing outwardly alarming).

Music Therapy with Justine
I was completely frazzled about what to do that when he woke up screaming in pain again only 1/2 hour later my stomach dropped.  He wasn't screaming quite as much as he had been the previous time and he seemed to want down so I laid him on the floor on his side and he actually started to play a bit.  He would play, scream, and then play again (repeat).

The screaming episodes got further apart so I didn't feel the urgency to take him in that I had earlier (and it is always so much fun to walk into Emerge while B is 'calm' and try to explain that he's really uncomfortable).  I also knew that Justine would be at the house soon and I had sent a message to Dr.Cassie to pick her brain.

Rain sticks
My instant thought was that he'd reacted to the coconut oil (since he didn't 'digest' the water in his tummy) but Justine reassured me that he'd been having bouts of pain the day before as well.  I'm still not convinced that the coconut oil didn't have something to do with it but I might be willing to try it again (later).

A visit from Sweet Araya (and her Momma and Grandma!)
 so the boys could love all over her!
What I have been wondering (and keep in mind I do NOT have a medical degree, only a Mr.B degree) is whether or not B could have an 'internal hernia'.  When I look at the symptoms and match them to another Blogger-Mom's (with her own complex care kid) they match.  It would explain the 'coming and going' of the pain and how sometimes when he's in pain at night he can settle down after a bit when he's been readjusted in his positioning (like changing sides).  The thing is that it isn't seen on an xray, only by CT.  Could it be that when his intestines are moving along if part of it gets 'stuck' (hernia) then his stomach would back up?  Just my thought (again no medical evidence to back this up).

I'm helping with the feed Momma!
I actually sent Dr.Cassie an email in regards to this (before the pain episode had even happened) and she had forwarded it to Dr.Volmerio to review.  She (Dr.Cassie) told me she'd look into it.  I know, what do I know?  Right?  What I DO know is that we are missing something.  I've said it once and I'll say it again, something is missing.  There is a puzzle piece roaming free out there with some important information on it.  Looking back through my blog 'notes' as well, it has been SIX months since all of this started, six months of B having bouts of 'pain' and having difficulty eating.  Six long months of him still not being able to handle the volumes of feed he was back in April of this year.  Six long months of no answers.

Originally, if you remember, it was thought to be a motility issue and he even went on new motility drugs (on top of the one he was already on).  But...and with B there is always a but...Dr.Wrobel (GI Dr) found nothing on the biopsies she did of his upper GI (in August).  As far as I understand that if it is a true motility issue something should have shown up.

There is also the Ileus (part of the intestine stops working) back in June (when B spent the month in hospital).  It wasn't a 'textbook' Ileus either, it was something on his abdo xray that appeared to possibly be an Ileus (and B wasn't able to hold any food down so it made sense).

Also keep in mind the blood clots that B's had come back through his g-tube, where the heck are those coming from?  Is it that his stomach is so upset that he's having small bleeds?  But again, his stomach looked 'great' (no ulcers)when Dr.Brindle checked it out in August during his last surgery.

Superman sleeps here
I just don't know anymore and I obviously came across that way to Dr.Cassie on Wednesday after this latest 'episode'.  Dr.Cassie contacted both Dr.Volmerio (his ACH Dr that knows him the best) and Dr.Brindle (Surgeon extraordinaire) and the three of them decided that B should go into hospital for a 2 week observation when he's 'healthy' to see if we can get to the bottom of all of this.

I am happy they care about him enough to warrant this but also scared because of the risks associated with B just being in the cesspool of the hospital.  It is flu and RSV season and I would hate for him to get a hospital cold when he's 'healthy'.  I think all three of these amazing women know that I'm not the kind of Mom to jump the gun to run tests on B or demand much.  I am also extremely grateful that they all believe in me and what I say!  We are so very blessed with the Dr's that have been given to us for B's care.

T playing peek-a-boo with big brothers ever!
We waited Thursday for a phone call to come in but none came (and it's not urgent).  I speculated with Justine that chances are there wasn't a bed for him and/or it was going to be staff change over starting next week (when the Dr's change rotation).  I did get a call from Dr.V Friday morning explaining just that, no bed and new Dr on Monday.  The fantastic thing is that Dr.MacNeil (who was B's first ever Dr on Unit 2) is starting her rotation on Purple Team (B's chronic care team).  Dr.V really wanted to make sure there was room on Purple for him (since it's where he belongs) and that the hope is to put us on Unit 2 (our home away from home).  The hope is for a bed early this week so that we can take full advantage of Dr.MacNeil's rotation.

For now we wait.  Mr.B's had a decent weekend at least and has been able to cope with all of his feeds so that is always reassuring.
Why sleep in the whole crib when you can squish up at the top?

It has also been a blow to my emotions this week as well since there was a death of a fellow ACH child that I've been following.  I can't say enough how this breaks my heart.  I didn't realized he'd passed away until reading it on Facebook and I felt instantly heartbroken for his family. 

Emmitt Reutlinger was only 20mths old and had a very similar story to Braeden's.  Emmitt's Momma contacted me about six months ago to say 'hello' and make the connection.  Both of our boys have two older, adoring brothers and both of our boys have shared many of the same wonderful Nurses and Doctors at ACH.  Much of Emmitt's journey was similar to B's in many regards but true to the sense that he too was an amazing fighter.  Emmitt overcame so many obstacles to live his short 20 months of life.

My first reaction had been devastation, for both Emmitt and for his wonderful family and then I got angry.  Why is this life so horribly cruel?  I've cried many tears for sweet Emmitt over the weekend, each time I see his sweet face in pictures (he had the most amazing huge blue eyes!) but I still remained mad.  What I came to realize (not so shocking) is that my life isn't really the "norm".  I don't know how many people live in a life where children just die.  Of course anyone can die, accidents etc. happen but because of B I've come to have a life full of the most wonderful children and their families.  The big difference is that these children die.  So many people that have become a part of our lives in the past two years have either complex care kids, chronically ill kids, or terminal kids.

I was actually in the mall on Friday night with B and I was watching a family walking towards me with five children in tow.  My first thought?  Wow, they are all (seemingly) healthy kids.  I started to look around and realized that most of the parents among me had 'healthy' kids.  How is that possible that there are so many healthy kids born sequentially to parents? 

My second thought?  It's too bad that they don't get to experience the life I have.  While I might live a life in which children die, I also have the blessings to live the life where children survive (even if only for a short time) against all of the odds stacked against them.  I get to watch these children fight and make people fall to their knees when they learn what these children overcome. 

I am so very blessed that I can kiss my sweet B tonight and hold him close but I'm also reminded that life is unpredictable.  Having a complex care child like Braeden is a blessing, I have learned to live my life each and every day (sometimes it is for each and every minute).  I appreciate all that is around me and the people that have come into my/our lives because of Braeden.

What I do know is not one of the parents that I've met that have lost their child regrets even a second of it.  We are all so very blessed.

So please, take a moment and send Emmitt, his Momma Ashley and their family a positive thought.  Close your eyes and send them a hug, imagine that positive energy reaching out to them and helping them along this horribly sad path they have to walk without him.  Ashley has also created a page for Emmitt on Facebook to raise awareness for Cerebral Palsy and to create a Foundation in his honour.  Please click HERE for the link.

Written by Ashley (Emmitt's Warrior Momma):

"Emmitt Angus, born January 20,2012 came into our life three months early. Dealing with severe medical issues, he began to impact many lives from his very first breath. Emmitt lived a strong 20 months and 8 days, proving to the world that he had a gift unlike any other.
This foundation is to keep his legacy living, continuing to bring people together for the greater good of mankind.
Creating Awareness for Cerebral Palsy Kids and Families"

In Remembrance of Emmitt Reutlinger...Rest in peace Sweet Angel and spread your wings.

From Our Home To Yours...

1 comment:

Pete O. said...

Dear Lia ... Words are tough to find to describe how I feel after reading of your recent experiences. Life is precious and fragile and should not be taken for granted - thank you for reminding me. I am in awe of Mr. B, you, your family and other families with serious illnesses.