Friday, 21 June 2013

Back Into Hospital and Calgary In Crisis

So many lives have been changed dramatically in our little piece of the world in the past 24 hours...we (in Calgary and Southern Alberta) are in a State of Emergency from flooding.  That being said, we (my little family unit) are fine (mild basement flooding), we are up high above the rivers but many of our friends are not.  So many are in fear of losing everything but what they left their houses with after being evacuated.  Please, if you can take a moment to send some positivity out into this vast universe of ours for them.

Mayor Nenshi (Calgary's Mayor) was speaking to a CNN reporter this morning and they couldn't understand why our temporary shelters weren't full of 10's of thousands of people.  The Mayor responded in kind that we are Calgarians and Canadians.  We certainly are and I sincerely hope we will get through all of this as a community and a city.  If it would just stop raining...

Onto Mr.B...

Playing with his hospital drum (compliments of Nurse Breanna)
We are back in hospital, we did make it until Thursday.  I was tracking his feeds at home and he was only able to handle every second or third one (completely) even though we'd moved to smaller feeds.  The issue he's having is that he'll get 1/2 way into a feed and then just start screaming and hunch over into the fetal position.  Not what a Momma wants to see.  If I vent him at this point (essentially pulling feed out of his stomach) he'll settle but the moment I put any of it back in it is the same reaction.  This is how we woke up yesterday morning so needless to say the boys didn't make it to school on time.  B's been really cuddly/clingy lately too and I couldn't put him down for an hour and a 1/2 or he'd scream.  So after calling Dr.V to explain all of this she told me it really was just best to bring him back in so she could actually lay hands on him.

Back in we went but not before having to explain to his brothers that he'd not be home again when they got home from school.  I dropped two sad little boys off at school (only 45 mins late mind you!) and came home to pack.

I tried to pack lightly knowing we'd be in the procedure room but it is hard knowing what toys will interest him.  I got him settled in and had to head out to pick up the big boys from school.  When I got back to ACH Breanna (Nurse Extraordinaire) told me he'd had a nice 'screaming' episode for her when she ran his feed as well.  I was very happy to hear that, not for the fact that he gave her a hard time but because he did for her exactly what he'd been doing at home and it was now documented.  As if this boy wasn't confusing enough!

And...stuck here too
What the basic consensus is (after much head scratching and shaking) is that he's just unable to tolerate any amounts of feed over about 100mls (less than 1/2 of what he is supposed to eat and USED to eat per feed).  Dr. Volmiero went back through all of B's last two weeks with a fine tooth comb and figured that he'd just been pushed too fast with his returns to feeds.  She also explained to me that during his last contrast dye study that they'd inserted about 100mls of fluid during the test and that his stomach was very distended with this volume (of course keep in mind this was put in over 5 mins).  It would seem that his tummy just doesn't 'stretch' like it would before all of this started 2 mths ago (when all the retching increased).  The other thing to note is that the contrast study watches the stomach empty (which his does well) but it's not like they hang around to see if it stays hypothesis (yup, my Medical opinion) is that if there is in fact a motility issue in the intestines that the stomach empties well into the intestines  but then hits the motility spot and can't get processed fast enough thus backing up, causing him to feel ill (retching), increasing oral secretions (clear snot out of the nose) and on and on.

What the heck do we do now?  Well Dr.V's put him on 24hrs of continuous feeds to give him a break and to give him a full day of calories.  We'll start with small feeds again tomorrow run over an hour with an hour off in between for the weekend and then she'll re-evaluate Monday when she's back in.  There really is no real rhyme or reason to all of this, it is just Mr.B being, well, Mr.B.  I still have a niggling concern at the back of my brain that there is something more going on with his intestines and such but he is really soft and palpable when his tummy is examined.

I am really hoping that the upper GI scope that we're waiting for will give us some answers or at least guide us down a better path for his feeds.  The problem with that test is that it is part of the 'surgery' he needs to be under sedation for it and so they won't attempt that until he is at least 6 weeks free of infection (pneumonia).  We've only got another 4 weeks to go...yay?

In the meantime Dr.V has ordered a metabolic rate test for him as well that we were supposed to have done today but the tech had issues with all of this flooding.  We've rescheduled it for Monday but I'm really not too sure how it is going to go.  The Dietician explained it to me by saying that they put a clear plastic dome over his head measuring his oxygen and co2 emissions...oh and did I mention he's supposed to be STILL for this test AND it takes an HOUR??  I laughed and said he doesn't lay still for an hour when he sleeps and her response was that they generally hold the child down...for an HOUR???

Maybe I'll call in sick Monday...

In all seriousness, we are I think (oddly) fortunate to have the procedure room for B to stay in as the hospital(s) are bursting at the seams.  It is harder to be in here due to some limitations (no bathroom or window or tv) but we're making do and B can't be on continuous feeds at home, I just can't do it.  The biggest positive about this room though is that it is down the hallway on the way to the staff room so B gets to give out lots of smiles.  The other great positive is that he's got Breanna as a Nurse for the next couple of days as well.

I'm not too sure what I'm supposed to be doing with myself though, I know B is safe here so again I am torn about being with the other boys through this crazy emergency time.  We are in great need of milk and bread for the weekend but it would seem as though the grocery stores have been picked dry already.  It is hard trying to convince myself to leave when I know B is bored and there's not much I can do to assuage that other than being here (and that surely isn't always working either).  Once again I'm at an impasse with myself.

From Our (Soggy) Home (Hospital Room) To Yours...

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