Last week we found out that once again the Prograf is non-detectable in Luke's blood. The Prograf is flavored with chocolate and Sean and I are wondering if the "special" pharmacy we were told to go to is just selling us a $300.00 bottle of chocolate syrup (no worries...insurance covers it!) Anyway, Luke's dose has gone up to three times a day. It has proven to be quite a challenge because the doses need to be 7-8 hours apart and that means that one dose is either very late at night, or very early in the morning. Luke is very good about taking his "choco-licious" (a little name we made up for it), but when I wake him out of a dead sleep and try to shove "choco-licious" down his throat, he gets so upset that he ends up vomiting and doesn't get the medication at all. Instead of calling the nephrologist and having him suggest an IV three times a day (way worse than having to wake him up in the middle of the night), I have decided to try giving him a small glass of milk with the meds in it for the late dose. My thinking is that he will be so tired he will drink it and go back to sleep. He still uses a sippy cup and can lay down while he drinks, so this may work. Keep your fingers crossed! His next blood test is tomorrow, that is if we get the late dose in him tonight, because if we do not, then odds are it will not be in his blood come morning.
In other news, Alexa ran a fever all last night and will probably go to the pediatrician this afternoon. She has never had a single problem, other than hunger, in her 5 months of life, and was still a trooper all night long, just wanting to be held, and trying to sleep as much as she could. We knew yesterday that something was wrong because she was not her super smiley self. I think she secretly likes the extra attention from Mommy and Daddy, and may try to fake a fever next time she thinks Luke is monopolizing too much of our time!
We had an excellent Easter with both of our families. Alexa got to meet her Great Grandma and Grandpa Murray for the first time, and both Luke and Lexi made out like bandits when it came to Easter baskets. Anyone know what I can do with 9 pink and blue Easter baskets?
Please pray for Luke to continue to breeze through whatever may come next.
Sean and Angela. I continue to pray for you each day. In reading your posts, I can't help, but to think that both of you are handling all this with great energy and courage. I pray for the health of both Luke and little Alexa. Luke has had to endue so much, but he sounds like a real trooper. I hope your own tenacity remains high to push hard to get Luke the best care possible.
ReplyDeleteBlessings on both of you and your family. I'm glad all of you were able to celebrate with family on Easter. I hope that taking time away from the day-to-day gives your spirits time to rest a bit.
Know of my daily prayers and thoughts.
Love, Aunt Mary