Diuretics at the Hospital

After a couple weeks of carrying around extra fluid the oral diuretics that we started using on Friday did not work.  Luke woke up this morning with eyes swollen shut.  I called the Nephrologist and told him Luke needed something else, he is on day 6 of taking 3 different diuretics and he is still waking up like this.  The Neph explained that when you are as bloated as Luke, sometimes it is hard for the intestine walls to absorb an oral medication.  Luke was admitted into Central DuPage Hospital early this morning and is getting diuretics through an IV.  We will definitely be here over night.  The Neph is planning 2 doses and they need to be 6 hours apart.  Hopefully the 2 doses are enough, but we will see after the second one if the weight has come off.  Let's all pray that 2 is enough because Luke is very upset to be sleeping here tonight, and has asked repeatedly to go home.  He took a nap from about 12 to 2 and when he woke up he asked if he had slept for a night yet, because then he could go home.

Please pray that Luke continues to be strong and breeze through whatever may come next.

The Latest on Luke

Good News: Luke has started Kindergarten and loves it!! He has his moments when he misses mommy (and mommy misses him too!) but for the most part he loves it and looks forward to going each day.

Bad News: Luke already missed a day. Friday morning he woke up and vomited. His eyes were nearly swollen shut, and his belly was so swollen that no pants or shorts were comfortable on him.  He has gradually swelled up from 60 pounds to 75 pounds in the past week.  He is relapsing pretty bad and spilling as much protein as our test strips will test for.  After getting in touch with the Nephrologist it was decided that Luke would take diuretics to release the extra fluid he is retaining. We started the diuretics last night and we are hoping for some signs of relief for him soon.  If the diuretics are not working by late afternoon we will need to admit him to the hospital to get the diuretics in an IV. So, we are praying that the oral medication works and Luke is feeling better soon.  If you refer back to my posts "The Difference a Diuretic Makes" and "My Eyes Aren't Workin" you will see that we have not used diuretics since Luke was 2.  They worked well then and we are hoping they work well now.

Luke is still on antibiotics, and we restarted the Cell Cept a couple of days ago. I am realizing now that the antibiotics are not the magic cure I thought they would be.  It seems to me that it is actually the onset of antibiotics that usually puts Luke into remission.  The antibiotics are done in a couple of days and my prediction is that the next time Luke needs them, whether it be an ear infection, or pink eye, or whatever normal childhood illness he picks up, they will give him an antibiotic. The onset of it will put him into remission and then the remission will fade into a relapse, unless the Cell Cept starts to work.  We shall see.

Please pray that Luke continues to be strong and breezes through whatever may come next.

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.