We had our appointment in Memphis on Monday. It was a long day for Mac but all was well. He had an MRI and EEG and a consult with Neurology because he has been on an anti-seizure medicine this whole year since his PRES seizure last September. Remember me saying that PRES was a long name, but the important part is that the "R" stands for Reversible? That was all I could absorb in my exhausted, overwhelmed, ICU-parent condition!! It means Posterior Reversible Encephalopathy Syndrome and was brought on suddenly by the cyclosporine, the steroid and a spike in his blood pressure. Those were the lowest of the low days, and thankfully Mac doesn't really remember them. He says they gave him "mind erasing drugs" and that is pretty much true!! Thank God for modern medicine! Anyway, the results were fine and we are starting a long slow taper of the Keppra.
His bloodwork was ok also. He has 150,000 platelets!! Anything above 150,000 is in the normal range, so he just needs 1 more platelet and he'll be normal!! His hemoglobin was 9.7. It needs to go up more, but he's doing well and managing his long school days just fine. So we are maitaining the status quo with the shot right now, and see where things are in a few weeks.
To wrap up the appointments Monday, he got a flu shot. We laughed because while most kids dread flu shots, to Mac, it was just one more thing, no big deal, a piece of cake. As he said, "I get a shot every night!" He's a tough guy who has endured more than most people see in a lifetime and he can still joke about it!! His is not a strength you can see, like on the football field, but an inner strength that gets him through the ordeal that is a catastrophic illness at such a young age.
Our next labs here in NO will be in early December and back to St. Jude at the end of December. Our next trip to Memphis will be for fun, however, for the marathon weekend!!! Go Team MacAttack!! We are in 4th place now and very proud!! Our fundraising is in high gear right now and thanks to all of you who have contributed to this great cause. It was Danny's dream that "no child should die in the dawn of life." I know I have written that before but if you read it slowly and really think about it, how can you not tear up a little?!!
I probably won't write before Thanksgiving, so have a good one! I am very thankful for St. Jude and for Mac's continued recovery, and for you and all of your prayers and support. That, I am sure, is what has gotten us to where we are now.
