Praying for Remission by Prograf

Luke met with the pediatrician Tuesday, and the nephrologist yesterday. The pediatrician prescribed another rounds of antibiotics for an ear infection that Luke has been fighting since before he went into the hospital on New Year's Eve. It had dawned on me Monday night that Luke could not hear me everytime I said something. At one point I found him to be studying my face and then looking around him as if to get some clues as to what I was saying. Then replied with an answer that had nothing to do with my question. I asked the pediatrician if this could be from the ear infection and she said that his middle ear is so inflamed that it is pretty much closed, and the ear drum is bulging. So, in other words, Luke is in pain, and not hearing so well. Hopefully the antibiotics will clear this up once and for all and no other action will need to be taken.

The nephrologist appointment went well. Luke is going to continue his Prograf, and we are hoping that this alone will put him back into remission. The nephrologist seems to think that another round of prednisone might be needed. This is the steroid that made Luke blow up to almost twice his size, have horrible mood swings, and a very hard time sleeping. And, let's not forget it did nothing to help him!!! The neph said that some kids are resistant at first, but if they try again at an older age they might respond. Another reason that this might be worth trying is that when Prednisone works for a child it not only puts them into remission, but often heals them for good. While Prograf has put Luke into remission in the past (and I am confident that it will again) it works like a band aid and once Luke is off the Prograf he relapses right away. So the plan is to keep up with the Prograf for three to four weeks to see if it will once again put him into remission. If this doesn't work we will consider the steroid again. Not something I even want to start thinking about right now!!!

The pictures are of the kids in their Halloween costumes. I figure since I didn't write for a year that I could highlight some of the great times we had in the past year.

Long Time No Blog

I must apologize to my followers! It has been well over a year since my last post. Luke has been doing well. He had a great summer, excelled at swim lessons, and turned four in September. He started pre-school and continues to make us so very proud of him. Up until about a week ago Luke was in remission for almost a year. The Prograf was working wonderfully, and all was well. Right after Christmas Luke and his sister caught a nasty virus, and it proved too much for Luke to handle. The pediatrician put him on an antibiotic for an ear infection and said to expect a couple more days of fevers and the virus would run it's course. He started throwing up and was not getting the Prograf he needs to stay in remission. After a couple of days of him not getting off the couch, eating nothing, running a constant fever, and barely talking we took him to the ER. In the ER they confirmed what Sean and I already knew, that he was relapsing, and his albumin level was dangerously low. Albumin is a protein, and Luke had started to lose it at an alarming rate. He was admitted to the hospital and spent his New Years under the close watch of the pediatric staff. He had a fever for four days, which topped out at 104.5. He barely ate anything and slept a lot. He was given diuretics to help him start urinating, and lose some of his swelling. The diuretics were also meant to help him produce more albumin. The virus finally passed. The fever broke and the vomiting stopped. We came home last night and luke is back on his prograf and working his way back to remission.

My guy Luke is very strong, he barely cries anymore during blood tests, willingly does whatever is asked of him, and not until his last night in the hospital did he complain or ask to go home. Today he even learned to swallow pills, if you have a four year old or younger you know this is a huge feat, and going to make mom's and dad's life A LOT easier!

When we returned home last night the first thing he asked was, "Is Lexi here? Did she miss me?" He was so excited to see his sister. They immediately got on the couch together and began playing and hugging.

We will meet with his nephrologist on Wednesday and see what's next. We had thought that the next meeting with the Nephrologist would be to discuss getting him off of the Prograf. Unfortunately, we learned the hard way that Luke is not ready to be off of his medication. Hopefully this will soon seem like a small bump in the road, and we will be back to school and back in remission.

Please continue to pray for luke to be strong and continue to breeze through whatever may come next.