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Like a needle to my heart...

Getting My daughter tested for Platelet Storage Pool Deficiency was a nightmare. The Dr's warned me it would be extensive, but nothing could've prepared me for what took place.  She has only gotten her blood drawn 4 times, but they're all experiences we just can't seem to forget.....
Test #1: Time sensitive Platelet aggregate tests
Getting her tested the 1st time was I'm sure similar to any parent driving 80 miles to an unknown hematologist to get their 2 yr old tested for a bleeding disorder......I WAS TERRIFIED. But I put on my brave face, as they pulled out the 9 tubes they were going to draw her blood into and convinced myself this was going to be OK. I'll never forget the way Scarlett looked at me the first time they put that needle into her arm, it hurts my heart to this day.  She looked up at me with such hurt and confusion as to why I would be letting her go through such pain.  I just held her tight and told her to sing her favorite songs with me.......Twinkle, Twinkle Little Star and the ABC's and they were still drawing blood.........that's when she started screaming and crying "No, No Momma No......all done". The lump in my throat was growing as I tried to hold back my own tears, and plead with my 2 yr old to stop screaming and that it was almost over. I looked up at the technician and looked into her eyes as if to say, don't you see what she's going through? She answered..."only one more". A sigh of relief. We made it, we got through it, now time to go home and wait for the hematologist to tell us what's wrong.......or so we thought.  20 miles into my long drive home, the hematologist calls and says they "messed up the tests and didn't get them to the lab in time........ I was going to have to take another day off work and come back to get her tested again."

Test #2: The nightmare.....the one Scarlett will probably never forget:(
After experiencing the first blood draw alone, I decided this time I needed emotional support, so I brought my Mom and sister with us too.  The second we walked into the lab and I said Scarlett's name the lab went into overdrive....all the sudden nurses and receptionists started running around and I instantly had an uneasy feeling.   Scarlett's hematologist had expressed her anger with the first mess up and had them all a fluster. A half an hour later they finally call us into the lab to get her blood drawn and Scarlett started screaming! My Mom and I both fought to hold her down as the technician couldn't find her vein and kept poking her left arm over and over again. After several minutes of Scarlett screaming in pain, she decided to try the other arm.  My Mom and I still to this day remember the way she was moving the needle around in her arm trying to find the vein, bruising her with every move. By the time they were finished we had all lost our brave faces and I think all three of us walked out of there in tears.  That set of tests was successful though and we found out she has a platelet storage pool deficiency

Test #3: Still trying to find more answers.....looking for a specific deficiency
After the first two tests we decided to give Scarlett a break for awhile and decided to wait 6 months before we put her through any more trauma.  Since the second trip to the hematologist she had experienced nightmares and extreme fears of Dr's anytime we mentioned needing to see one, so we knew this blood draw was going to be an experience.  This time however, they sent us to a pediatric lab which ended up helping cause she got through it fine with just a few tears.

Test # 4: testing for Glanzmanns disease and my sons first blood panel
The last test Scarlett took was to see if she had Glanzmanns Disease,  and we also got my 1 yr old son tested for any bleeding disorders. She was 4 by this time and well aware of her disorder enough to know she had to be strong and brave and just get through it. Scarlett didn't get diagnosed with Glanzmanns so they're just diagnosing her with Platelet Storage Pool Deficiency as of right now!......My son has no platelet disorders but could be a carrier. 

A child getting diagnosed with a life threatening disease is very emotionally draining for both the family and the child.  We try to keep an open dialogue in our house about Scatlett and my disorder and it is often discussed at the dinner table.  My daughter has endured a lot in her first 5 years of life trying to understand her bleeding disorder and we appreciate you reading our story............I truly believe the more people that hear our story the closer we are to finding a cure.
Written by,
Kari Peepe



©KariPeepe/atouchofscarlett.blogspot.com
http://atouchofscarlett.blogspot.com

For more stories about getting Scarlett tested, injuries and her health please check out:

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Location: Rohnert Park Rohnert Park

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