After meeting with the doctor last Monday we have decided to stick with Prograf.......only this time it will be given correctly. That's right, correctly. We think we know why the medication never showed up in Luke's blood. When we met with the nephrologist last week he asked us to bring the bottle of Prograf with us. I took the bottle out of the fridge and put it into a little cooler pack that I use for Lexi's bottles, because the sticker from the pharmacy says "REFRIGERATE." When we took the bottle from the cooler pack to show the nephrologist he looked at the bottle and said, "You keep this in the fridge?" Um, yea...that's what the pharmacy said. Not only did the pharmacy put a sticker on the information that said refrigerate, but when I pick it up the pharmacist takes it out of a fridge and gives it to me. The neph went on to tell us that the transplant doctors from Children's Memorial sent him a long email detailing the use of Prograf and said it should not be refrigerated. So in other words my 2 year old son , who is fighting a rare kidney disease has been taking very dangerous medication the wrong way for the last two months. It would have been longer if I hadn't said enough is enough and taken him off of it myself. This could explain the horrible diarrhea, diaper rash, and loss of appetite, which were the main reasons I took him off the prograf in the first place. If it had been working or even showing up in his blood I would have kept him on it to endure the side effects, but it was going right through him, I knew it would not be the solution to his problem. The pharmacy will be hearing from us.
As of two days ago Luke is back on prograf only this time they are capsules. So far there have been no problems at all, so let's just pray that this is the answer. Luke will also be on a low dose of antibiotic to protect him from infection, a very low maintenance dose of Prednisone, and diuretics as needed.
In other news Luke and Lexi have been out and about in the beautiful weather, and we are looking forward to a good summer with a trip to California to see baby Nicholas and Mickey Mouse the last week of May, and two trips to Wisconsin in July!
Please pray for Luke to be strong and continue to breeze through whatever may come next.
