Pneumonia, Antibiotics, and Kindergarten!

Luke has had a rough couple of weeks.  First he got Hand, Foot, and Mouth Disease. It is a nasty virus that comes with fever, vomiting, and sores that look like Chicken Pox.  He got it bad, and there are still marks on him from the sores.  Alexa got this virus too, but she had about three sores and only ran a fever for about a day.  About 5 days after we were sure he was better he started running a fever and vomiting again.  This time the Pediatrician said it was a virus and needed to run its course. Alexa got a touch of the same virus.  She ran a 99.9 for about 8 hours and was back to playing ponies the next day.  Four days later Luke was still running a fever, that Tylenol would not break, still vomiting, and now coughing a horrible cough that scared me enough to bring him to the ER.  In the ER they found he had pneumonia and his albumin (protein) levels were very low.  He has been relapsing and spilling protein since his biopsy in May.  The Cell Cept (medication started in May after his biopsy) has not yet worked, and was hurting his chances of fighting off disease.

The ER doctor along with Luke's Nephrologist decided to take him off the Cell Cept to give his body a chance to fight the pneumonia. He was given antibiotics intravenously, and breathing treatments to help him breathe and clear up his lungs.  It was also decided that he would need intravenous antibiotics for the next couple days as well. Regular oral antibiotics were not strong enough for him at this point.

So we were released form the ER with an inhaler and appointments to see the pediatrician for shots of antibiotic. I was scared and worried about my son, but at the same time...I was thrilled!  Why? Because luke was off kidney medication and on some super strong antibiotics.  If you've read my past posts you will remember that antibiotics always put Luke into remission.  The day after the ER Luke was swollen in his eyes and belly, and his protein was sky high. He received one more shot of antibiotics and did not need the second shot, they determined he was strong enough to take regular oral antibiotics to get rid of the rest of the pneumonia.  Two days after the ER Luke was not swollen at all and his protein had come way down. ANTIBIOTICS!!!! all he is on is antibiotics!!!!  And he looks and feels the best he has since May.

So what's next?? We met with the pediatric nephrologist yesterday.  I had a lot of questions and unfortunately so does the nephrologist. Luke is still a rare case and they have never seen this type of reaction with antibiotics.   The Neph is on board with giving more antibiotics a shot, but as we all know that cannot go on forever.  We decided to give Cell Cept one more chance along with the antibiotics.  This particular drug usually takes about 6 months to work and we need to give it a real chance.  Cell Cept is a last hope.  The next drugs to try after Cell Cept are "drastic," and "come with serious side effects." According to the Neph, "There are no good answers." Luke is still running on 100% function, but the 100% is coming from 50% of his kidneys.  The working halves of each kidney are working over time to compensate for the 50% that are not working.  We are hoping that the scaring has halted (which is why he takes an ace inhibitor), but can't know for sure, and the Neph has warned us that he could some day be dealing with chronic kidney failure.

So for now Luke feels great (antibiotics), and is starting Kindergarten in 11 days. I know the minutes and seconds too, but won't bore you with the details.  Alexa and I will be lost without him.  We cannot believe he will be gone all day, everyday. He is ready though, even told me he can't wait to ride the bus....bus?  We'll see about that!

Please continue to pray that Luke is strong and breezes through whatever may come next.