Friday, 21 March 2014

The Raw Truth

Today was certainly a better day (as was yesterday) and Mr.B is getting to be more and more like his ol' self each day.  It never fails to amaze me how he can simply 'bounce' back from needing critical care.

B's oxygen is now down to only 1 litre which is just so great.  I'm sure we can wean it further tomorrow again and that he'll be able to come off it soon.  I know he'd like to get his nostrils back again not to mention one fewer set of cords/tubes.

It's been a hard two days because I've been spending time in meetings for the Critical Care Strategic Network that I belong to so I've been missing my B.  I did get my chance to tell B's story this morning to our group and it was very well received.  This isn't the first time that I've 'presented' his story but this is the first time that I did it from a 'raw' perspective.  I told it completely from the heart, reading from some of the early blog posts.  The group today were all professionals within Critical Care in Alberta (aside from the other Patient and Family Advisor like myself).  I wanted to really let it sink in how life looks on the other side of the bed in Critical Care, a true look at a Family's view.

It was an hour long presentation that I bawled my way through my dry (or wet rather) run of last night (thank you Ang for the songs).  It is so shocking to me when I read back through the early blog postings to just how much my poor child had to endure.  I lived it, right there in the midst of it and I still find it astounding.  There were lots of tears shed today (most of them not actually mine!) so I think that it was a success! :)

Part of what I missed yesterday with not being here was that our wonderful Dr.B came and swapped out B's g-tube for us.  B's tube has been leaking since this admission (which it usually does with being sick) but we couldn't find a reason for it.  We LOVE our AMT mini one (that I specially ordered through the US because it's not sold in Canada) but I was willing to go back to the Mic-key and give it a shot (the thought was that the internal balloon was maybe misshapen in the old one).  There is no real reason to why the Mic-key is working and the AMT is not but we've no longer got leakage around the stoma which is great news. 

For those of you not too familiar with g-tubes, the 'stoma' is the tract that the tube sits in (it is the tube from the skin into the stomach).  If there is leakage out the stoma then the child has stomach acid and food coming back out and it can break down the skin quickly forming sore spots.

The Residents weren't too happy with me that I didn't want them to start using the new tube yesterday, that I wanted to give his stoma one more day of rest (tube removal and insertion is still painful after two years).  I held my ground though (not like I wouldn't have) and we started running Pedialyte today and so far so good.  He's now on a continuous flow of Pedialyte and if he's still not leaking he'll be back on his regular formula by morning.  It will take another few days to work back up to his 'normal' feedings but we're on the right path.

Between weaning the oxygen and (hopefully) starting feeds tomorrow we're (me) feeling good that we might only need to be in another few days.  I'm happy to take his feeds slow but am also ready to go home away from all the other 'germy germs' here.

Now to just start again with getting his weight back up...

From Our (Unit 2) Home To Yours...

No comments: