Saturday, 19 October 2013

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...

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