On Friday I took Miranda for a blood test.  It was, ahem, a bit of an adventure…

First let me say that Miranda isn’t sick.  She needs the test to get a base-line reading of her blood chemistry before beginning a regime of high doses of vitamin D.  One of her doctors theorizes that there’s a remote chance vitamin D might have a helpful effect on FOP, and since D is touted these days as a substance with all kinds of health benefits, we figured we’d try it.

So back to the blood test - I’ve known for a while that blood tests would be a necessary part of the proposed vitamin D program, so a number of weeks ago I sought the opinions of our wider FOP community on how to safely do blood tests.  In people with Fibrodysplasia Ossificans Progressiva, particular care must be taken to make sure a person getting a blood test doesn’t accidentally end up with an intramuscular needle poke, because that can cause an FOP flare-up.  Anyway, I got lots and lots of helpful suggestions from our community.  Also, our pediatrician told us that the phlebotomists at our Children’s Hospital are very skilled at drawing blood from kids with special needs, so I was confident we could get the test done with minimal difficulty.

Fast forward to Friday…  We got ourselves organized, and off we went to the hospital.  That’s when I made my big mistake - before leaving, I should have reviewed all the useful information I had previously collected on blood tests and FOP.  But, for some inexplicable reason, I didn’t re-read it.  Call it a distracted mommy moment.

We arrived at the hospital’s blood lab.  When it was our turn, I explained in simple terms about FOP, and that intramuscular injections, which are a form of trauma, must be avoided.  The technician looked slightly irritated, and said, “It’s better if we don’t have to worry about intramuscular…” in such a way as to suggest that I needed to just “get over it” and not be so anal retentive.  ???  OK…  Clearly this woman didn’t get it.  So I took a deep breath and tried to explain it again.  She nodded, and pulled her manager into the room to supervise.  I advised that the test would have to be done on the hand (one of the good pieces of advice I remembered from other FOPers), since Miranda’s arms can’t straighten.  The woman nodded - right, she said, and grabbed a rubber tourniquet to wrap around Miranda’s arm.

Whooooooaaaa…  Tourniquet!  Tourniquet??  How had I forgotten they’d use a tourniquet?  I’ve had many blood tests myself, but had blanked out on that part of it.  I frantically searched my mind to see if I could recall anything about using a tourniquet, or alternatives thereto.  Nothing came to mind - it having been 6 weeks or so since I read my information from the FOP community - and I had to make a decision.  Using a tourniquet to bind and tighten M’s arm seemed like potentially a very bad idea, so I said nope, we’ll have to do without it.  By this time, Miranda was getting wiggly and squirmy, and not all that interested in sitting still, and I was getting kind of frazzled.  I waited for the technicians to suggest an alternative to the tourniquet, but…  They just stared at me blankly and said nothing.  I had a bad feeling about this by now, but I said OK, let’s give it a try on M’s hand.

I held on to Miranda while they tried to get the needle in (with no blood vessel enhancing procedures done beforehand).  Naturally, M started screaming at about that point, and didn’t let up.  I looked down at the needle, and saw that only a trickle of blood was making its way into the tube, no-where near enough to actually collect.  Right about that time, I knew it wasn’t going to work.  I told the phlebotomists to stop, and that we’d have to be done for the day then and there.

After that, Miranda remained very whiny and clingy for a while, until I got her the box of Smarties I had promised as a reward for doing the test.  She proceeded to scarf back the candy, and then was perfectly fine again and back to her old chatty self.

Okaaaaay.  So, I guess that was a complete failure.  I was feeling very frustrated, and we went home.  Upon arrival, I went to my computer and looked again at the information I had previously collected.  When I did so, I found all kinds of helpful bits of information - such as warming the hand beforehand as an alternative to using a tourniquet to make vessels pop out, requesting that the blood drawer use the “haemophilia protocol” (extra small needle), and requesting that an experienced intensive care nurse be requested to draw the blood.  Of course, I had remembered pretty much none of that when in the clinic…

At that point I was kicking myself around the block.  Where were my brains before we left for this blood test, and why didn’t I check all this out before we left???  (As an aside - why didn’t the technicians have any of these suggestions either?  I think that’s a bit odd.  Still, I will give them the benefit of the doubt and assume it was an OFF DAY.)

Oh well.  I guess I will have to call it a learning experience, and we’ll give it another try probably next week.  Wish us luck.