Wednesday, 26 June 2013

Radioactive Baby

Um, Little help here maybe Momma??
It's funny how each time you (we) go into Emerge the thought is always 1) whether or not he'll be admitted and 2) for how long.  I certainly wasn't expecting a 3 week (and going) visit this time around that's for sure!  It really just goes to show you never know with this kid!

I didn't do a post last night so that I could go to bed early (kinda) and take a sleeping pill.  I did do that but unfortunately felt more tired this morning...I don't get this trying to sleep thing I guess!  Frustrating!

Pink Jailbird!  Love the hospital jammies, guess my Mom
should do some of my laundry!
The exciting news of the day (well one of the exciting things) that my In-Laws should be arriving at my house shortly after a very long trip in from BC today.  After all of the road closures and construction I'm sure they're going to want to sleep for a week straight but I think T and Ry will have other plans!  The boys are beside themselves knowing they were going to be arriving (of course they think they'll be here tomorrow...surprise!).  I'm so looking forward to see more smiles and more laughter at home, not that the boys aren't 'happy' kids it's just that life is that much more wonderful when Grandparent's (or Aunts and Uncles) are involved!

Nurse Stephanie!  My Momma met Steph when she was
pregnant with me before she even became a Nurse at
ACH so I love her that much more for altering her
career path to take care of me...:)

So about this BIG Metabolic test that has been stressing me out with a non-stop stress headache?...Monday it was postponed due to all the issues with the flood, Yesterday they came in to do the test right after he woke from a 3 hour nap (unprecedented) and told me they want him asleep for it (whaaaaaaat??) AND today we scheduled it for a time that he 'should' be napping and the little Turkey wouldn't go to sleep!  I finally got him down 1/2 hr later than planned and the lady doing the test was supposed to be paged.  Somehow, somewhere the page wasn't gotten and she came down after he'd been asleep for 1 1/2 hrs and he promptly woke when she put the cover over his head....seriously.  I asked her if she wanted to run it anyhow and I would try my darnedest to distract him but she said if he got at all upset the numbers would be off....ugh.  This poor boy has had to go without food for a minimum of 4 bloomin' hours before the test each more.  Dr.Volmiero called it quits to the test, it's just too much for data that isn't crucial to his wellness.  Frustrating (from the inability to just 'catch' it, not with Dr.V's cancelling it).

This boy and music!  He is always enraptured with
Sarah the Music Therapist.

All in all B's been holding steady at his 100 mls/hr boluses with continuous overnight feeds.  He's still retchy but not full out retching (generally) which is great.  Dr.V's in no hurry to push him (which is wonderful since she's probably getting pressure to get us out of here), she's willing to let him go slow and steady.  We've also decided (I like to think my opinion matters here!) to do the full contrast study which will look at his whole gut, stomach to bottom (no pun intended...okay maybe it was).  Yes it is more contrast (radiation) and yes, yes, yes more and more xrays but I really feel like we (the proverbial 'we') are missing something.  The more Dr.V, Dr.Brindle and I talk this through it just doesn't make any sense (shocking with Braeden).  How and why does he handle 250 mls over an hour for weeks and weeks to barely being able to handle 100mls in that time frame now?  It just doesn't make sense, there are no real symptoms and no other major changes (aside from the retching and pain).  I'm happy with the decision to look further and yes, it sucks that it has to be another contrast study but I don't think I'll be happy without it...I'm worried about him (no surprise there) and very concerned about what this means going forward with his feeds.

Who doesn't want a 'pants' hat?  Yes, my Momma paraded
me around the entire Unit last night like this...sheesh!
Mr.B was an absolute card tonight for Dr.V!  She was crouched on the floor with him and he was doing circles on the floor around her.  Completely showing off all his moves and having all of us in stitches!  He was doing some forward crawling and we all cheered so he stopped, looked at us, then (as I narrated he would) rolled onto his back so he could clap...brilliant (I soooo wish I'd recorded it)!  Pretty sure he made Dr.V's day.

Volunteer and Friend Dana came by for a visit.  I had to
show off my house and doorbell for her!
Slow and steady is how we'll proceed and I'm not too sure when the contrast study will be yet (in the next two days).  I am hoping (fingers crossed) it is Friday, not tomorrow simply because the kids go in for a 1/2 day tomorrow (since school was cancelled due to the flood) and I would hate to not be here.  The only thing worse then having to watch you child be strapped to a board screaming is to NOT be there with him.

Showing Nurse Jenny how to clap!
Mr.B continues to be his usual entertaining self and after three weeks of hard work and perseverance (by his Nurses) B started blowing kisses yesterday and again today.  He's only done it a few times but man, once this kid sees the reactions he'll get he'll be giving them out left, right and centre, just you watch!

On the flip side Mr.B's been coughing more and more the last 24 hrs...but I am trying to ignore it (not really).  Fingers crossed and positive thoughts that this is just passing through please!

Life continues to be difficult in terms of finding our (my) balance but at least some of that will be alleviated even further with the arrival of the Grandparents.  School is 'officially' out tomorrow and summer is upon us.  Adventure awaits...(if you don't count this non-stop adventure ride I'm already on).

I wanted to share with you the most amazing quote that I came across today as well:
"Perhaps strength doesn't reside in having never been broken
but in the courage required to grow strong in the broken places
I simply love it!
From Our Home (Hospital Room) To Yours...

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