Saturday, February 14, 2015
Thursday was a very long day as we knew it would be. It started at 8 am at the clinic with signing the consent forms to begin the re-treatment trial and doing routine exams. Next, cardiology for an EKG and ECHO exam. Next, the routine eye exam (really?) to make sure the drugs had not damaged Clay's retina. Next, the MRI, which was running a routine 1- hour late. All went fine to this point, except for the fact that Clay had nothing to eat for 24 hours and he seemed to have picked up a stomach bug along the way. Post-MRI and anesthesia we wheeled a very "fuzzy" Clay up back to the clinic, to have the doctor come out with a sheet of paper, telling us he could not get the drugs because his sodium and calcium levels were too low. So we ended our 10 hour day empty-handed and very angry. That night we pumped Clay full of calcium pills and TUMS tablets, as well as gatorade and salty canned chicken soup (have you checked the sodium levels on that?!). Friday, I took him to the clinic again for another blood draw. Four hours later they called to say his levels were still low, but sufficient enough to qualify for the trial and get the drugs!!! JD picked them up after work, and today Clay started re-treatment. Big sigh. No Valentine -- no diamond earrings -- could be better than the 56 small white pills sitting on my dresser.