Luke had a beautiful end of February and whole month of March. He was in remission and avoiding illness at all cost. This week, Luke and Alexa both got Bronchitis. Alexa was good to go in 3 days. We thought Luke was too, and then he woke up yesterday with a low fever and vomiting. His eyes were swollen and his urine was testing very high in protein. A relapse. He took to the couch and was pretty out of it. After 3 failed calls to the nephrologist I took him to the CDH emergency room. He slept the whole time we were there, and thankfully no needles were used. The out come of the trip was that Luke needs to start steroid therapy again. This means Prednisone. The steroid I keep mentioning that I swore would never be allowed in my home again. If you want to know why, you can go back to previous posts and read about what this steroid did to a two- year- old- Luke. The reason for trying this again is that if it works, it could cure him of Nephrotic Syndrome. The nephrologists says that it could work even though it did not the first time we tried back in 2008. While Prograf is putting him in remission and holding him there, it is not curing him and he is relapsing too much. So, I struck up a deal with the nephrologist that we would put him on Prednisone only as long as it takes to determine if it is going to work or not, and then an immediate taper. No dragging it out, either it works or it doesn't. There is no need to put him through the side effects of steroid use if we know it is not working. The nephrologist agreed and said three weeks is the max. So, the plan is to start the steroid therapy after our vacation to San Diego in three weeks. We figured we would let him enjoy the trip and then come home and give it a go. I will post again when the therapy begins to let you all know how it is going.
Along with this very handsome picture of Luke, I have posted a video of the kids sleeping in the car. Luke is REALLY into pirates right now....
Please continue to pray that Luke stays strong and continues to breeze though whatever may come next.
Please God grant me the Serenity to accept the things I cannot change, the Courage to change the things I can, and the Wisdom to know the difference.
You guys are in my prayers!!! Stay strong!! Love you guys! XOXOXOXO Ginger
ReplyDeletePlease GOD, grant Angela and Sean the sereniy to accept the things they cannot cannot change, the courage to change the things they can, and the wisdom to know the difference.God Bless you both on this struggle of your heart, your boy. My prayer is that Luke moves through this without any pain. He will move through this... give your worries to God and all takes care of itself. I do pray for you. My Love, Margee
ReplyDeleteOur prayers are with all of you! Big hugs to you. Let us know how we can help. xoxoxoxoxoxox Antie Sharona and Uncle Sparky
ReplyDeleteI will pray for your family and ask Nicholas to help Luke through this. Let me know if I can do anything for you!!! love, Julia Cabrera
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