William had his 9-month post-transplant blood panel last week. The studies show that William's lymphocyte subset panel was lower (a good bit lower actually) than it was when he left in August. Meaning that, based on these results, William's immune system isn't quite up to par yet. His BMT (Bone Marrow Transplant) Team in Pittsburgh believe those results may be incorrect as low as they are. They would actually like us to have that blood panel repeated in addition to trying to get another blood test, which takes a bit more blood and with William and his chunky (and oh so cute) arms, its hard for nurses to find a vein. Usually, William has to have an ultrasound in order to find a good vein for large blood draws (more than 5 mL) or to have an IV. For small blood draws where they check electrolytes, white blood cell counts, etc, what we usually get when we go to the doctor, they can do a finger prick. But not with these tests; the blood needs to be pulled from a vein. Which leads us to our next endeavor:
William's IgG level was borderline
low. IgG protects the body from infection. To “boost” this level, a
dose of IVIG needs to be given to help keep William healthy throughout
the Winter season. IVIG (Intravenous immunoglobulin) is a blood product
administered intravenously. He's had a number of these infusions while
in Pittsburgh. It contains the pooled, polyvalent, IgG antibodies
extracted from the plasma of over 1,000 blood donors. IVIG's effects
last between 2 weeks and 3 months and will get him through until our
Pittsburgh visit in January. IVIG is EXTREMELY expensive and our
insurance has covered this in the past. We are now waiting for our
insurance carrier to preauthorize the IVIG treatment and once they do,
we will have the infusion done about 30 minutes from where we live. We
won’t have to drive all the way to Salt Lake City for that procedure
We are also waiting on another preauthorization to get
William’s EEG done. Because of William’s seizure scare he had a few
weeks ago (which may or may not had been a seizure), his Krabbe doctor
wants him to have a 48-hour EEG monitor to check for any seizure
activity so she can have that information for our visit in Pittsburgh.
An EEG is a test that measures and records the electrical activity of
your brain by using sensors (electrodes) attached to your head.
Finally, our flights for our return visit to Pittsburgh are set for
January 11. This will be his 1-year post transplant testing and will
involve a lot of testing, everything from a lumbar puncture, MRI, vision
and hearing test, etc. Testing will last about 3 days. So much for just
a little boy.
I hope that all made sense. I had to talk to his
doctor at length this morning to explain on the blood work. I just hope
it doesn’t take long to get the preauthorization for those procedures.
Our insurance has been very good, but because his levels are “kind of
low”, and it “may had been a seizure”, sometimes it is difficult for
insurance companies to pay for such procedures.
Other than that,
William is doing quite well. He is comfortable, smiling, not showing any
signs of discomfort, and very alert. As for his Mama, I worry all the
Much love, Abbey