Tuesday, 7 May 2013

We Have Lift Off and I'm NOT Medically Trained!

Happy 1/2 Birthday to our Big Boy!!!  The longest and yet shortest, the happiest and yet scariest 18mths of our lives!



g-tube inflated, the balloon goes in the
stomach and the 'button' goes on his tummy
It has been a rough week and a bit as we are still dealing with this 'infection' that B's been fighting.  We had a first last Monday morning, an incredibly scary/crappy start to my week, Mr.B's g-tube just 'popped' out of him.  Yes, the whole G-tube.  Yes, it was still inflated.  Yes, it made me panic and bit.  And NO, it isn't supposed to happen!  I'm still not sure how it did happen!  How does a whole balloon (size of a nickel) come out a hole the size of a drinking straw??  The most bizarre thing was that B wasn't traumatized by it's ejection, he just flinched.  Now normally when I'm changing him and the g-tube gets accidentally tugged it hurts him (makes sense) but this time I barely snagged it and POP out it came!  Freaky!  So of course I started swearing and Ashley (bless her heart) said, "wow, I've not heard you really swear!".  My calm (not) response was, "yeah, well there's more of that coming!".  I did think quickly though and covered the hole (of course it is a direct line into his stomach) and got Ashley to take over holding the cloth on it (did I mention this woman is amazing under pressure?) while I deflated the balloon and got ready to reinsert it.  Now, I have to say a very large thank you (and yes, you can say you told me so) to Dr. Brindle.  When we were still in hospital Dr.Brindle made me insert his g-tube.  I was not a willing participant let me tell you!  I told her I wanted to kick her in the shins for making me do it and she replied that I'd thank her one day.  So "Thank you" Dr. Brindle, because of you I was able to somehow summon the confidence to reinsert it again.  I did some serious deep breathing and then gave it a go and got to reinflate it while Braeden writhed in agony.  I'm certainly not as smooth as a Surgeon or a g-tube Nurse!  I'm pretty confident in knowing that both Ashley and I were traumatized that day.  I got B cuddled up and called the g-tube Nurses line, while trying not to cry and when Karen (g-tube Nurse extraordinaire) called me back she said that, "yes, sometimes they just come out" and that I had done the right thing by reinserting it but that I shouldn't have used vaseline to lube it as it's not digestible (ooops, I panicked and wanted it to go in better/smoother).  So I guess you could say we got through it and survived but I've lost my confidence again in leaving B with anyone.  How do you possibly 'train' someone for the possibility of the g-tube 'popping' out?  Not cool.


Secrets being whispered by TT
Our Monday went on to be an even worse day as B went into Genetics for his skin biopsy.  They put a numbing cream on an hour or so before the biopsy so it was supposed to be fairly 'painless' but B is so over the whole 'Dr' thing now that he just screams as soon as someone comes at him with a stethoscope.  Needless to say I got to hold my child down while the took a core sample (they take about a centimetre deep of tissue out) out of his sweet baby thigh.  I asked the Dr if she got a good sample and she told me she could see his fat layer (gag!!!) so she thought it should be good.  She told me it looked like a good sample and hopefully it will grow assuming it didn't get contaminated otherwise we'd have to take another one (or NOT).  Needless to say a week later and B has a nice hole in his leg...makes me feel so awful that I chose to put him through that.  It is so hard to know sometimes what the right decision is for your child in the time.  We'll see what and if anything comes of it but they certainly won't be taking another sample if for some reason this one is tainted!  The good news is that Ashley can now say she's had exposure to g-tubes and medical procedures. 


Entertainment by Rylie
Mr.B continued(s) to fight his virus last week and by Thursday I realized that he really wasn't getting any better.  He had an initial period where he got better with his three days of steroids (and the continued use of inhalers) but then just plateaued.  I talked to Respiratory and they suggested another three days of the Dex (steroids) and a visit to our ENT to have his vocal cords scoped so that we could see why his breathing has gotten so much noisier.  Back on the steroids we went and he did get a jump at getting better again but is still (again) not getting over it.  He's been retching so much more lately too that he's been blowing open his feeding tube and losing entire feeds (when the g-tube gets under pressure it can pop open a valve and the entire stomach empties due to gravity and pressure on the bed/floor/etc).  He's actually even been retching in his sleep on and off and sleeping through it.  I think it is mostly mucous that is setting off a vagal reaction in him (gagging and retching).


Such L-O-V-E
 
My day started off today with B asleep and me checking on him this morning with an entire feed under him (soaked bedding and sleeper) and this is after a sleepless night of fighting a migraine and listening to him (and repeatedly checking on him) retch in his sleep.  Between the five retching episodes and the need for a bath (him, not me, I did shower), the kiddos were late for school and we rushed off to the hospital for a day of appointments.  B started off with a Hearing appointment and yes, we will need new ear tubes but we can hopefully wait and just 'back onto' another surgery.  Our Hearing Dr is also our Vocal Cord Dr (Dr.Brookes, Ear Nose and Throat Dr) so he took us in the next room for a vocal cord scope.  Yep, it is as unpleasant as it sounds, they take a tiny flexible camera and send it up the nose and down the throat.  It is however kinda cool to see his vocal cords.  We (he) compared it too his last scope and it seems as though the right vocal cord isn't opening fully (it is supposed to be the 'good' cord).  He's got some swelling in the cords and it slows them down.  If you or I got swelling we'd sound a bit hoarse but for B to have swelling it means his vocal cords work harder (and slower) which makes breathing (and swallowing) harder.  Dr.Brookes is happy to just ride it out for now and see how B progresses over the next few weeks with this until we decide to do any further testing or more rounds of steroids.

So fresh off his scope I carted him over to the g-tube Nurses and got his g-tube looked at (it's been incredibly sensitive since I had to reinsert it, after I, you know, pulled it out!!) and she burned off the tiny bit of granular tissue.  (I just realized that this posting might need a 'gross' warning at the top of it, sorry folks!).  Poor Mr.B! We did get a very nice visit in though with one of our fav NICU Nurses Trish after that though! 

Then off to pick up the brothers  from school at lunch only to return to ACH for a Cardiology appointment for Ry to have a Holter Monitor put on (he had another episode a few weeks ago of severe chest pain where he came into the house clutching the middle of his chest, aren't my children lovely and stress-free??). 


Happy Pants
And finally we rounded off our day with a visit to Vision to discuss B's droopy eye lids.  We're going to "try" to patch Mr.B's right eye to see if we can force the left eye to work a bit harder to strengthen it.  It won't help the 'droopiness' but it strengthens the pathways from the eye to the brain.  We are still waiting to get in to see the eyelid Plastic Surgeon to see about our surgery options but we'll try out the patching for now.  I'm not too sure how that will fly with B but we'll give her a go anyhow.


Getting a hang of this 'playing' thing
You can certainly say my life is never, ever, ever, ever, ever, ever (you get the idea), dull.


Reading with Daddy
Oops, all done!!
So now that you've made it to the end of the 'grossness' I've got AMAZING NEWS!  We have movement!  We have LIFTOFF!!  Mr.B has started to crawl!!!  He does it in typical B fashion (forging his own path) by putting his forehead on the ground for leverage but he is slowly but surely moving in a forward motion!  He is also getting faster at moving in reverse as well!!  So on his 18mth Birthday, for your viewing pleasure, the ASTOUNDING Mr.B:
video



From Our Home to Yours...

 




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