Our first “Tune up” for CF


Day 1

Well where do I begin………………….It’s Ebony’s very first admission for a Bronchoaloear Lavage and PICC line.  I guess this is all part of the so called “Tune Up” that we’ve been hearing about.  She went into theater and got frightened by the mask.  I guess who likes someone else controlling your breathing and making you go to sleep.  When she finally came out it was just over 2 hours when I met up with her again in recovery.  Now she had a PICC line which is a tube that was inserted into her arm near  elbow.  This runs up the main vein and into the large blood vessel at the top near the heart (that’s what I’ve been told).  She also had an IV line too.   When the team came up later the showed me the photo’s they took of inside her little lungs.  They were so surprised with all the mucus……that thick sticky mucus that was FULL in her lungs.  They said they had to photograph it because it’s the worst they’ve seen.   Well, when you say your childs sick and they keep sending you home saying that she sounds clear ……….what do they expect.  I was annoyed when they suggested that her treatments of physio isn’t being met.  Hang on a minute………………….open your ears, I’ve been saying for how many years that she never brings up the mucus and that the only time she does is when it’s accumulated over a year and she gets to the point of having difficulty breathing…………….then vomits up more than a fist full of this sticky thick stuff.  I guess this has always fallen on silent ears.   Anyway I will have lots of discussions with the team today about all of this.

Now she’s finally on the Polyezyme (however spelt) and the Hypertonic saline, Physio three times a day and a list of meds and antibiotics.  Yesterday was a day of confusion, with meds being forgotten and treatments missed (not by me, but the staff) so I guess they need to be more organised.   So my thoughts on the so called “Tune up”……………………..hmmmm, next time they need to listen to a mother’s instinct and not ignore what we are trying to say for a start.  I’m frustrated that doing everything I’ve been taught to do, hasn’t been enough to keeping her well.  In saying that, I’m proud that she has just had her 7th birthday and it’s our first ever admission for CF.   The only other admission was for dehydration a couple of years ago.

So here goes our “Tune up” journey for at least the next to weeks!  Lot’s of meds, treatments and sleepless nights.

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