30 Oct 1 Whole Kilo
Keegan weighed in at a whopping 7 lbs 4 oz today at clinic!! That’s a 1 kilogram more than he was when we were discharged from the hospital. He’s still “below the curve” weight-wise, but he’s getting there! His EKG and chest x-ray looked good today. They cut down the amount of the steroid he has been taking, which is great because it tastes like paint thinner. I speak from experience because I tasted all of his meds. Don’t laugh … I had to know what I was shoving down my son’s throat every day! Most of them aren’t bad, but the prednisone – wow. I put a dot, a tiny droplet, on my hand, licked it, and gagged. I had to run to the fridge for some water over a little dot of the stuff. Poor guy. Anyway, he only has to take it once a day now, so that’s a big step in his day-to-day even if it’s not a medical step forward.
He still is not on the last anti-rejection medication, and I got a little clarification as to why today. He received a few doses of it when he was in the hospital, and it’s doing what it is supposed to do, namely reduce the amount of a specific type of white blood cells. So, as long as it is working, he doesn’t have to take more. Dr. Fixler said today this is actually a good thing. They did increase his level of the other anti-rejection med, tacrolimus, again today. As far as we’ve been told, that’s normal, and we’re stepping it up slowly to protect his kidneys. For those of you who remember the “kidney scare” after transplant, his kidneys are doing just fine for now. He’s still on the diuretic, but that’s more of a preventative measure than anything.
On a fun note, Keegan wore his Halloween costume to clinic today since he won’t go again until after the holiday. He was a chili pepper, and a mighty cute one if I do say so myself. We posted a few pics, and we’ll definitely take more on Wednesday. Everyone at the hospital thought he was a very convincing (and adorable) little pepper! The other cool thing that happened today was that Keegan met Father Deeves when we stopped at Ursuline to drop something off for his Aunt Alex. Father Deeves had a heart transplant 18 years ago, which was performed by Dr. Steves Ring. Dr. Ring is still technically the head of pediatric heart transplant at Children’s and for adults at UT Southwestern. He began the program at Children’s 20 years ago. Dr. Ring followed and consulted on Keegan’s case but didn’t assist in the surgery. Father Deeves has been praying for Keegan at daily Mass since he was born and was so happy to meet the youngest and smallest heart transplant recipient. There’s a picture of the two of them with Alex on the photo page.