Friday, September 14, 2012

Our Story Continues...A Big Blood Draw

Monday morning we are set to have a blood draw on Hailey and this blood will be tested for 6 of the most common known diagnosed Leukodystrophy diseases. This 6 have had some sort of treatment given to patients which include, bone marrow transplants, radiation, and chemotherapy without any success. The thing we learned about these 6 types of the disease is that they are progressive once you have your first initial episode the patients continue to decline. They don't reoccurring episodes, but Hailey seemed to come back. Better then before in my opinion. In my heart and mind I don't feel as if this is what she has.
Once the phlebotomist arrives we all tense up. I ask why they can't just take blood through he IV? Once medicine is administered through an IV you can't draw blood from it. So we have to poke her. I asked the tech if she was really good at her job. I only want to have to poke her ONCE! After they prep Hailey they have all the vials lined up and gauze and tape ready they pull out the tourniquet. Hailey knows what's coming and she freaks out. You can't blame her can you? Well after a few moments with our breath held the tech pokes and hits the vein! Finally! Hailey is still screaming but the blood is flowing.
I remember watching those vials fill up and knowing how much information is stored in that blood. What was the test going to tell us? We'd have to wait 4-6 weeks to find out.

Josh's mom flies down from Washington and is at the hospital with us. We should be going home tomorrow after her last IVIG treatment. Our regular neurologist is back and comes to the hospital that night. The look on this guys face when he saw that we were back in the hospital was a look of dread. He knew this was something more then ADEM but he had told us this could be just a chronic case of ADEM. Hailey will be discharged tomorrow and put BACK on steroids. The highest dose I think he's ever prescribed. He also recommended that we see a geneticist. The problem with that, there is only ONE in the WHOLE state and her waiting list is a YEAR long! Even with a STAT referral it's been 9 months and I still don't have an appointment.

Hailey's granny sent her a gift that Josh's mom brought down. Hailey had a new friend. When you press the paw the dogs ears flap up and down really fast and she thinks this is pretty funny.

We try getting Hailey to bare weight and walk a little bit. There isn't much difference from yesterday to today with that though. I am starting to think this IVIG treatment isn't what she needs. Josh's mom brings dinner. A home cooked meal. There is just something about that you miss when you don't have it. Today and tomorrow are pretty much the same. Get the IVIG and sleep. Tomorrow we get to go home.