Sunday, 22 September 2013

Can You Tell We're Related?

So did something last weekend that I'd would have thought 'unthinkable' a year ago...I went away for the weekend (the whole weekend even) to the West Coast to surprise my sister Marisa for her 40th Birthday.  For those of you that haven't read the whole blog (I know, it's long), I have these three amazing women that support me and guide (boss) me along my journey of life.  I have not one, not two but THREE big sisters!  I know I've certainly written about them before and what they all mean to me. 

I kinda might be the impulsive one among us (big surprise being the youngest I know), and so I brought up the idea of a 'sister's weekend' as a surprise.  The other two were completely on board and we started discussing logistics (they all live on the West Coast).  I didn't really stop and think for a moment what it would really mean for me to be away for an entire weekend without the three wasn't till I was booking my plane ticket that I started to feel a wee anxious.  The thing is?  Everything about the weekend fell into place, from having my in-laws here to being able to stay at my (most fantabulous) friend's condo for the weekend.  Even the planning and the reservations for our plans fell neatly into could I not go?

I spent the week before at ACH with B wondering if he'd be going home in time for me to be gone or not.  I was kind of torn about the best option, for him to be home or in ACH under 24hr medical supervision...not that I doubted my wonderful husband for a second!  Things got a little rough when we trialed a new formula just days before I was set to leave and B had a horrible reaction to it.

Always seeking sunshine
The plan now that B is approaching his 2nd Birthday (in less then two months!!) he should be on more 'real' food (my opinion and the Dietician's).  We thought, after careful consideration and chatting with the other Dr's, that B should be able to try the Pediatric Complete formula (roast beef in a can essentially).  Of course the hesitation was more to do with the fact that it's a milk based formula and the thought (once upon a time) was that B might be allergic to milk.  His GI felt pretty comfortable that it most likely wasn't a milk allergy at all but just that he's sensitive to changes...

So we tried and I have to say I was a bit scared (to say the least) since our last attempt at changing to a new formula was disastrous with non-stop retching.  I was amazed that he handled the first feed without incidence, then the second and even the third.  I was floating on cloud nine on the way home that night thinking all the good things that would come with a new and better diet for B.  He was due to be discharged the next day since he'd done great and I was feeling like we'd finally turned another corner. 

When I got to the hospital the next morning I walked into B's room and he was mid-feed.  I looked at the formula in the bag and immediately said to Justine that it wasn't the same formula that he'd had the day before.  This formula was brown, no mistaking it and the day before it had been white.

You think you can keep me out...
I pretty much figured out that he'd not been changed over to the new formula after all the day before.  I immediately asked his Nurse about it and she double checked that he'd gotten the right formula that day and even opened a new can and poured it into a container for me to see the colour.  It was, you guessed it brown, not white.  So I guess we'd not trialed the new formula and he'd just been started that morning.  The good news was that he tolerated the first feed without too much change and I wasn't feeling totally deflated.  It was shortly before the second feed was due that he had his first retching episode.  Retched, vented, happy boy and second feed started...and second feed stopped because of non-stop retching...sigh.

Studious boy!
Apparently it is in fact a milk allergy.  The horrible part of it was that the first feed was going through his GI tract and he was miserable and in pain.  I felt terrible for putting him through it and never thought he'd get one feed in and then have his bad reaction.  He had a pretty rough day trying to work it through and the Dr came in to see me and said to me that he would be happy to do whatever I wanted.  I asked for B to be put BACK on straight Pedialyte for the next 24 hrs to clear out his system and to give his guts a break.  A huge step backwards for all of us.  Thankfully after the 'break' from feeding he was able to tolerate his feeds (regular formula) the next day and (finally) came home on Thursday.

Friday rolled around and I left that morning (after a little cry while putting Mr.B down for his nap).  I knew that I could go and I knew that it would be good for all of us to have a break and for Mom (me) to maybe find a touch of sanity (HA!).  I won't lie, that plane ride was awful and the guilt was miserable to deal with but I forced myself to look forward and knew I was only an hour long flight away from home.  By the time I arrived in Abbotsford, ate lunch and read uninterrupted I was feeling pretty excited about the weekend.

Long story short my oldest sister Christa kidnapped the Birthday Girl Marisa, (who was beyond surprised) and came to pick up myself and my other sister from the ferry (we drove to Vancouver and took the ferry to Vancouver Island for those of you not familiar with where I was going).  The Birthday Girl was shocked to see my sister Monique at the ferry terminal and as she was hugging her and crying I walked around the corner.  I'm not too sure if she was more surprised that I was there or that I'd in fact left B at home in Calgary.

We had a wonderful weekend, we ate, laughed, and ate some more and laughed even more!

And guess what?  We all survived!  Braeden, (the stinker) even pretty much slept through the night for Michael on the Friday night. (Although B had a miserable night on the Saturday night so I think that both he and Mike were happy to have me back on Sunday).  I think Torin's now forgiven me for going to his favourite place on the planet (with some of his favourite people) and I think Rylan has recovered from the fact that I took a plane without him (he's desperate to take a plane).

working hard
Mr.B still had some rough days last week and wasn't really back to himself (energy) till the end of the week.  The thing that scared me is that I could see that he'd lost weight in the short two days I was gone.  I knew that he'd not been gaining much but to be able to notice he'd lost weight was disconcerting.  We had him weighed at his therapy appointment on Thursday and I felt sick when I saw that he'd lost almost a full pound in the week he'd been home.  Certainly not the direction we were trying to go!  I was frustrated because I'd been getting no sleep (even less then normal) so that I could have him on continuous feeds at night so that he could get his full calorie count for the day.

His Dietician and I came up with the plan to start him on an oil supplement before his daytime feeds to boost his fat and calorie count.  I had found a great bottle of avocado oil on my weekend away and so I was happy to incorporate that into his diet.

The good news was the next day when we had him weighed at home with the Homecare Nurse she had him back up 200 grams so the weight loss may not be as bad as I initially thought.

I started the avocado oil supplement on Friday and he is seemingly tolerating it thus far.  He even had a (halfway to normal) looking stool today (fyi, I know but it's serious stuff in my house with B).  I have noticed he's got a rash on part of his face but I think (oh how I hope) it is leftover from the tape he had on his face Thursday night when we did another sleep study in ACH overnight.

32 probes on and ready for my (no) sleep study
I got a call on Wednesday asking if B could come in for a sleep study on Thursday night.  Sure, why not (the girl was shocked I said yes).  Off we went Thursday night to the (no) sleep clinic.  Mr.B was a trouper (of course) as he got the probes all 'glued' onto his head and body.  He certainly wasn't impressed but I expected him to absolutely freak out when we arrived and he saw the crib but he was fine.  I guess spending the few weeks before as an inpatient had some good qualities too.  I was however not impressed to learn that they would consider trialing him on c-pap possibly into the night...Braeden thinks c-pap is the equivalent to hell on earth (imagine a constant flow of air being forced up your nostrils and you having to breathe with it).

I have to say it was a pretty 'typical' night for B, he was up consistently through the night (but was just a little more angry then usual since it's obviously uncomfortable to sleep with bumps all over your head).  I'm not too sure how much info they were able to gather because he (and of course by proxy, I) were up a whole lot more then we were asleep.  It will be interesting to see if B was in fact 'awake' all the times he was freaking out or not (she couldn't give me a definitive answer).  We did not have to trial c-pap again though which was a relief AND it means that B's oxygenation when he's sleeping is GOOD!  Such a strong boy!

Snuggles with Angie
I am happy his lungs are getting so much stronger because illness is circling our house like a vulture and the hospitals have been seeing cases of flu and RSV already (very early in the season).  Rylan has come down with a bug of sorts (started like flu but is now looking like Strep) and is very sick.  All we can do is hand wash, hand wash, hand wash and sanitize like crazy each night.  I spent pretty much the whole weekend cleaning house anyhow so at least it is easier to maintain at this point.

Jenn and B (wearing the shirt Jenn bought him in Vegas
"I'm kind of a big deal")
We did have (yet another) successful Blood Drive again on Saturday.  The staff at the Blood Bank love to see how B is growing and changing.  I had the nicest man ever come up to me and ask if B was my son.  I replied, "yes" and he said, "Then I am so honoured to be donating today".  I LOVE the kindness of strangers!

We are off to see Dr.Cassie (B's regular Pediatrican) tomorrow and we'll have him weighed again there.  I am also going to bring up the notion that I'd like to have her consider getting an MRI for B since it's been over a year and I'd like to have a 'baseline' to go by for future.  I just have such a nagging feeling in my gut that we are missing something with his intestines.  I have no clue what, but it just really feels like there should be some sort of answer to why this kid was able to handle feeds of 250mls in an hour and can now barely handle half of that.  The scope last month showed nothing, the biopsies showed nothing and the new tube is in so the stomach has more space...there has to be another reason.  I'm not too sure if it is realistic for me to request or not (or receive) but we'll see.

the cereal workout
Mr.B continues to be on the move as much as possible each day and is continually finding new things to get into.  I've include a link (click here) of the latest YouTube video upload of B playing his 'cereal hockey' in the kitchen.  The kid just cracks me up, now if I could just convince him to clean up afterwards...

From Our Home (Finally) To Yours...

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