Nephrotic Syndrome-when it all began and now...

Sorry this is a long blog...I'm doing more details for journaling purposes, so please excuse the length.

Some of you know and some don't that my oldest daughter Cailee has a kidney disease called Nephrotic Syndrome. For those who don't, the short definition-this disease is where her kidneys pull a lot of protein out of her blood and she pees it out. We found out just this last June when we took her in to have a urine analysis for a potential UTI. She didn't have an infection, but the doctor found a significant amount of protein in her urine, so we started doing the simple tests to see what might be going on. Well, all the initial tests came back that her body was releasing a large amount all throughout the day, so we started in with the more invasive tests. Since then, she has had a number of blood draws for a lot of tests. We have a specialist in Denver that we are working with, who is so kind to let us be close to home and working with Cailee's pediatrician for most of the treatments, tests, ect.

The first treatment she was on was a steroid that they were hoping would force the filtration system in her kidneys to function properly with the hopes of completely healing them and putting her into remission, but no such luck. We were pretty frustrated that it wasn't working...all we saw was the side effects of the steroid...major mood swings, emotional breakdowns, swelling in her face because of water retention, which this Nephrotic Syndrome does anyways and aggresive behavior. She is still currently on the steroid because it is taking FOREVER to wean her off of them, however, the side effects seem to be lessoned since the dose is a lot lower. She will take her last dose New Years Eve...we will truly celebrate. During the beginning of taking the steroid, we discovered that her blood pressure was really high. We thought it might be because of the steroid, but even as her dose is lessening, it's still a fight to get it lowered. She is taking a high blood pressure medication and that dose has been upped twice since she started taking it. Her blood pressure dropped a bit after the last dose change, but she still fluctuates from Dr. apt to apt.

So onto treatment number two...an organ rejection medication called Prograf. With this medication, it meant that she would have to get her blood drawn weekly until we found the proper dose for her. Thank goodness it only took two blood draws to find the proper dose. When we went to Denver to see the specialist there, she really seemed optomistic about this medication working and gave it a deadline of a month for the protein level in her urine to show signs of dropping (at the doctors office they rate it on a scale of 1+,2+ and 3+ with 3+being very high levels of protein-not good). Well all along Cailee has been at a 3+ and throughout the process of taking the Prograf, she remained at a 3+ indicating that it was not working. This was hard because this medication made her joints hurt and there were so many nights that she would wake up crying because her legs hurt so bad. She started to lose some of her hair also because of this. I have to say I was happy that she no longer has to take this. So onto more tests. She has been a trooper through all the times she's had to have her blood drawn. The first time she had it drawn, it took both Blake and I and two nurses to get her arm out and still. It just broke my heart to have to do it to her. Now when we go, she just asks, "Mom, am I getting my blood drawn today?" like it's no big deal...just another day.

So more tests...ultrasound on the kidneys only confirmed that yes, she has Nephrotic Syndrome and that her kidneys were swollen, due to the disease that we already knew she had. They drew a lot of blood (I felt so bad for her, but she did awesome...the staff who did were so good with her and kept telling her she was so big and brave.) They sent out some of the blood to another lab to perform a genetic/chromisone test to see if there was something there to give us an idea of why this is happening to her and why she's not responding to any of the medications. They also tested at that lab for a number of other things and through all those tests, we still know nothing. We are feeling a little bit discouraged, but are holding onto the faith of family, friends and our wonderful ward in church.

Treatment number three...IV medication. So now we are onto the next treatment that will be a lot more aggresive. It will be taking her to the hospital once a week for four weeks to the pediatric infusion center to have medication given through an IV. We don't know yet how long she will have to be there each time. We should find out Monday all the details. We now are faced with the decision of putting in a pick line (it stays in her arm and goes up the vein closer to her heart) or having the IV put in each time. The risks of the pick line are so scary...infection, possibly getting pulled out, ect. I think we are going to have an IV put in each time since it's for four weeks. It's getting harder and harder to do these things knowing that she is going to be hurting. Her little body has been through so much already, but I know if we don't keep trying that the consequences will be much worse.

If we can't get this in remission, eventually her kidneys will start shutting down and she will have to go on dialysis or possibly have a kidney transplant. It's been so hard to watch my little baby go through this. I am so grateful to my family for standing strong for us through all of this. We have seen so many blessings come during this time...the days that have been the hardest and most disappointing, we've received that phone call that was a pick me up. When we felt so defeated, our Bishop called and asked if we wouldn't mind if our ward devoted the fast to Cailee and even though she hasn't responded yet to anything, it gave us hope when we felt defeated. I can't imagine going through this time without our family and friends backing us up. I can't even count the number of phone calls to my Mom and sister that when I first called felt so afraid and angry that when we were done talking, I felt a sense of comfort. Cailee's little body's immune system is down due to this disease and all the medications that she's on, but one of the greatest blessings is that she hasn't gotten sick through all of this. If she gets sick, she won't be able to fight it off very well, so we know that we have a Father in Heaven watching out for her.

So for now, we are continuing on and praying that this medication works. Stay strong our little Miss Cailee.