Last week, I got an email asking if Sienna has been free of flare-ups for 6 months.  And thankfully, she has!  (knock on wood, throw salt over your shoulder, say a prayer)  And if she met that criteria, would we be willing to provide a sample of her blood?

As background, intramuscular injections can cause FOP flare-ups.  Blood draws are ok when done carefully, but any needle near our sweetie makes us very nervous.  However, in the name of FOP research we said yes.  Of course.

But that led to some questions:

– Who would we trust to draw the blood?

– How will we tell Sienna?  Sienna knows that she can’t get shots so how do we tell her she CAN have her blood drawn and then tell her not to worry about it (when I’m worried about it myself!)

I started by calling the pediatrician’s office to ask if they could do the blood draw.  I get sent to voicemail as usual since my call was not urgent, nor am I hospital or pharmacy.  I leave a very detailed message and ask for a call back.  About half an hour later I get a call back from a somewhat abrasive RN at the office telling me “we don’t do that here”.

Hmm…  Is this is the same office where our beloved new doctor works, the doctor who told us that she will do anything she can to help Sienna?  Well here we are, needing a blood draw to help FOP research, which is as helpful to Sienna as one can get!

And wait a minute, abrasive RN, you don’t draw blood in your office?  I’ve been in the lab room and know that shots are given, blood is drawn, it’s a one stop shop!  Are you sure you can’t draw her blood?

Yes, very sure.

Can you talk to our doctor?

No.  I’m SURE we don’t do that here.  I’m going to send you to Greenwich hospital.  They’re the best.

Do they have experience with small children?

Yes, they’re the best.

Do I need papers?

No, it’s walk in.  They open at 7.

Ok, where do we go?

Greenwich hospital

I got THAT but where in the hospital do we go?

Outpatient lab.  (unspoken: and that is the last thing I will tell you)

Ok.  Thank you (unspoken: for being rude!  We should be celebrating the fact that FOP research is close to a clinical trial.  A fact that was clearly lost on you)

I decide to take a 1/2 vacation day Monday to allow un-rushed time to do the blood draw and get it shipped off to Penn.

Monday morning rolls around and Sienna is excited to go to the hospital.  Sienna loves doctors and is very interested in all things medical.  She wants to be a doctor, or a vet, or both.  We get breakfast and pack up about 10 of her puppies for the drive.

I had decided to tell Sienna about the blood draw on the drive there.  I didn’t want to tell her too far in advance so that she would stay up late worrying, and I didn’t want to tell her right as the needles came out because that would feel like a betrayal.  On the drive there felt like the right amount of time, and I decided to go for the soft sell.

Me:  So I’m not sure exactly what is needed, but we’ll both need to supply some samples for Penn today.  Mine is definitely a blood sample but I’m not sure what they need from you. Will you be willing to help me with my blood draw?  It feels like a pinch at first but then it’s no big deal.

Sienna:  Yes!

Me:  And if they need to draw your blood, that will be ok too, because girls who get blood drawn get to pick out really special treats afterwards.  And you know you can’t get shots, but did you know you actually CAN have your blood drawn if they are very careful.

Sienna: (nothing)

Me:  (thinking.  Ok!  I set it up.  Maybe that was all I needed to do.  Let’s change the subject!)

Sienna:  I don’t think I want to have my blood drawn.

Me:  Let’s just go and see what they need!  And if they do need to draw blood, remember, special treats!

We find the hospital and the lab without any trouble, get to the desk and explain why we are there.

Me:  We’re here to have our blood drawn.  We have a kit.

Desk lady: We don’t do kits here.

Me:  It’s for medical research.  It’s going to Penn.  I have a kit.  And a letter!

Desk lady:  We used to do that.  Years ago.  Not anymore.

Me: Well can you still do it today?  You do draw blood here, right?  The sign says “Outpatient blood draw”

Desk lady: Do you have papers? (meaning: get away from my desk)

Me: Our pediatrician’s office sent us here.  And I have a letter.  From Penn.  Doctors at Penn.  They’re getting ready for clinical trials!  Sienna here has a rare disease and they are getting really close…  (do not make me stand here and explain FOP in front of this entire waiting room  and do not make me turn from “mommy in waiting room” to “aggressive patient  advocate” because I will do it!)

Desk lady:  There’s nothing I can do.  Maybe when my supervisor gets here at 9 I can get more information (meaning: get away from my desk)

Me:  I need to have this blood drawn this morning so it can get to Penn tomorrow morning. (meaning: you will have to pick me up and move me to get me away from this desk.  And I’m twice your height.  Good luck, desk lady)

Sienna:  Let’s just go to the park.

Me: We can go to the park after this.  This won’t take long!  Don’t worry!

Desk lady: …. blank stare

Me: What do you need in order for us to get this done?  (blood boiling)

Desk lady: …  blank stare

Me:  Where else can we go to have this done?

Desk lady:  I think they can do it at CVS

Me: Are you kidding me???

Someone else arrived and had started waiting behind me.  So I step aside to let them have a turn while Sienna and I regroup and form a new plan.

Sienna decides to eat her bagel.  I decide I am not leaving here without blood.  (ha!  That sounded really scary.  I mean, I’m not leaving here without our blood, drawn and in its kit, ready to send to Penn)

I decide to try the pediatrician’s office.  They sent us here, they can help get us out of this.  Into the voicemail tree I go.  Ugh.  I decide that this qualifies as urgent because this is the only morning we can get this blood drawn and off to Penn, and FOP research in preparation for clinical trials is as urgent as it gets, so I hit the button.  I explain where I am, why I am there, and what I’m trying to get done to some man who answers the phone.  He transfers me to a voice that I KNOW is that same abrasive RN I spoke with on Friday.  She does not seem sorry for having sent me here.  However, she backs down and agrees to transfer me to a doctor.

I get not our doctor but another doctor who reminds my why we chose this practice.  She understands.  She asks what I need.  I say “just a blood draw”.  She asks why I didn’t come there.  Exactly!  I KNEW I could have gone there!  Take that, abrasive RN!  I tell her we will come right over.  But, the kind doctor says “you are already there and our staff won’t be here until 9.  How about I put in an order and see if that works?”  Yes! Yes!  Thank you!  Blood will be in my hands in no time!

So, genius doctor puts in an order for “miscellaneous”.  I march right back up to the desk lady and tell her our order is in.  She pulls it up and it’s there.  I win the point, right?

Apparently “miscellaneous” wasn’t enough for her.  I’m sent to sit back down while she whispers with someone else and calls our referring doctor.  Sienna, meanwhile is begging to go to the park.  Lots more whispering behind the desk.   Then…

Two nice men in lab coats with big smiles:  Ok mommy!  We’re ready for you!  (only one of them said that, this wasn’t a musical number)

Having finally penetrated the front desk, Sienna and I were led into a room by the two super nice men.  I guess I should call them phlebotomists but I think that is a funny word.  Anyways, success!  I show them our kit:  4 empty vials, two for me and two for Sienna.  Sienna and I have decided that I will go first.  They do my draw and I take careful note of that initial pinch, terrified for Sienna, but acting like it’s no big deal.  Sienna is super interested, watching the needle go in and the vials fill with blood.

“Great job, mommy!”

Then, just as they finish my draw and I am applying pressure to my bandage, Sienna makes a break for it.  “My turn!” and starts climbing the giant bed-chair across the room.  I make a run for it to prevent her from falling and in the process, my un-pressurized wound squirts blood all over my arm.  Uh oh.

Me:  ho hum..  just got to clean this up a bit.  Nothing to see here…

Luckily, Sienna doesn’t care.  She’s excited because it’s her turn!  Excited!  Wow, my sales job must have worked.

Sienna gleefully climbed into the giant chair, covers her lap with her stuffed puppies and holds out her arm, ready to go.  Wow.  Not even a little nervous.

The nice phlebotomists got ready, explaining each step to her, gently putting the band around her arm, cleaning the area, looking for the vein.  Then they told her to look away when it was time to draw the blood.  No chance!  My future doctor was all eyes and didn’t flinch for one second when the needle went in.  She watched the tubes fill up, fascinated.