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Friday, March 12, 2010


I'm on my way to Tahoe so I figured now would be the perfect time to post a quick blog update.

Can you tell that I'm really lovin' this iPhone and Blogger app?

This week has been particularly stressful so our mini vacay couldn't have come at a better time. This is our very first road trip with all of the cubs so I'm not too happy that it's raining like crazy. This weather has me apprehensive despite the fact that this big black monster truck bus that we call our "family car" is set up to completely withstand any snow storm sans chains.

Nevertheless, I'm terrifed of getting stuck in a snow storm or worse, getting into an accident!

So, because I'm a little paranoid, we have tons of food/water/blankets in the car, Niki is wearing her Medic Alert, the boys are strapped in super tight, and I told John we'll just have to eat him if we end up get lost in the mountains. Lol! ;)

But I digress...

This week has been stressful because Niki's INR has been crazy. I can't link educational stuff right now, but her INR is important. It's a blood test that we draw once a month to help Dr. Awesome determine whether or not Niki's prophy dose needs to be adjusted. When Niki was first born they monitored her INR a few times a day in the NICU. When Niki came home from the hospital we drew her labs at the trough end of her factor schedule (at the same time) every week. Then we did them biweekly. As Niki's condition became more stable Dr. Awesome slowly allowed us the luxury of performing blood draws once a month.

Her range is supposed to be between 1-3, but she was at 7 on Tuesday!

An INR that high is life threatening folks! Nurse Richard immediately called us to perform another lab draw the following day because surely it HAD to be a mistake from the lab. (Niki's INR is usually in the 1-2 range.)

The following day her INR was 9!!!

Something was screwy with the lab because there no way that we could have possibly messed up on TWO lab draws. Nurse Richard and Dr. Awesome agreed, but nevertheless they had to make sure Niki didn't develop an inhibitor. That could also be why her INR was high.

To put it lightly, inhibitors suck.

It makes managing a bleeding disorder extremely difficult because patients basically develop something in their blood that "eats up" their missing factor. So, once someone with an inhibitor is infused with their missing respective factor it's not as effective to aid in clotting. An inhibitor would be bad news for Niki because NovoSeven was created for people with inhibitors.

Treatment options would be very limited if Niki developed an inhibitor and we were utterly horrified with the idea of it.

Unfortunately, there isn't very much documentation about FVII inhibitors because the disorder is so rare. So, she would have to be a guinea pig all over again. This morning we did another lab draw to see if the two high INRs were indeed correct. We took the sample to a different lab this time and Dr. Awesome also had a separate sample sent by taxi to a special labratory (outside of the Kaiser network) in Oakland.

We held our breath and hoped for the best.

We just got her results two hours ago and her INR was 2!!! Whew! Nurse Richard and did some investigative work and figured out that the tube that we use to discard the first 2ml of Heparinized blood in her line also a bit of Heparin (a blood thinner) in the preservative. This means that a tiny bit of Heparin was getting in the "clean sample tube" thus altering the results. Once he figured out the problem we all breathed a huge sigh of relief. Our Tahoe trip was back on and Niki was just fine.

I'm now looking forward to a weekend of relaxation with hopefully no need to eat John in the near future. ;-P

This weather is nuts, but of course the cubs are completely oblivious.

- Posted using BlogPress from my iPhone

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