Wednesday, April 21, 2010

NIH Update (from Kathryn)

Earlier in the week, the phlebotomist took 14 vials of Qavah's blood.  As a result, today's CBC count was low enough to schedule a transfusion for late this afternoon. 

The bone marrow aspiration that took place early this morning went better than expected.  Mom said the entire procedure was very interesting.  The doctors were able to collect the bone marrow and get a biopsy.  Qavah woke up from the anesthesia rather quickly, ate a big breakfast, walked around, and then began playing!  The doctors and nurses were utterly amazed.  After the procedure was complete, a special team of scientists, decked out in white uniforms with head masks, came to collect the bone marrow for "freezing," so that it can be preserved for future research.  Mom commented on how she's always watched "research in action" within the science and medical world on TV, but now she's living it.   

Qavah had another audiology appointment scheduled for 1:00pm today. Yesterday, Qavah's hearing exam showed that she is completely deaf in her left ear.  NIH is now wanting to figure out the cause. The doctors need to know if the ear was not formed correctly.  So tomorrow, Qavah will have a head scan using contrast dye.  Interestingly, the ears are developed at the same time as the kidneys.  Therefore, people who have ear issues often experience kidney problems (and vice versa); Qavah only has one kidney. Hearing loss can also be a side effect of the drug Ex-Jade, which Qavah takes every morning. 

Mom is feeling physically stronger each day, even though the schedule is demanding and long. Mom has tried her best to find some fun activities to do with with Qavah in between all of the doctor appointments and tests.  They've also tried to go to bed early.  Mom and Qavah are looking forward to Dad's arrival; he'll be going to pick them up on Friday.

Thank you again for your continued prayers, comments, and phone calls.  The Lord is providing Mom and Qavah the strength, endurance, and patience they've needed for each day, just like His Word promises.