| This is Kolby's Story
When you are the parent of a child with FSGS, life is uncertain. So we really can’t say how 2005 will turn out for our family and our courageous little hero, Kolby, now four years old, as we wait for a kidney transplant. But at least 2005 started out in the right direction – for the first time in quite a while we did not spend New Year’s Day in the hospital.
What causes FSGS, no one seems to know. But we do know that when Kolby was two, he had multiple bouts with pneumonia and stopped eating. He felt lousy just about every week and I took him to the doctor, explaining that Kolby just lay around, not eating hardly anything but gaining weight.
This went on until one Saturday when Kolby’s eyes were swollen, he was extremely lethargic and he had gained another pound. Pneumonia again, said the doctor, who prescribed Prednisone and antibiotics. By Tuesday, I had had enough. I found a new doctor and said my son had gained another three pounds without eating, that this was not normal and I wanted him fixed.
After about two hours and a lot of tests, the doctor came back with this news: your son has Nephrotic Syndrome, go NOW to Arkansas Children’s Hospital. Kolby spent a week there, though it seemed like forever, and after lots of steroids and Lasix he went into a four week remission. Well, he got an appetite back but everything he loved he could not eat anymore. Welcome to No Added Saltland. So our son eventually stopped eating again.
Soon Kolby was spilling large amounts of protein into his urine again. We spent New Years 03 at our second home -- the hospital – where Kolby was filling with fluid. They did albumin infusions in the hospital and tried to stabilize him.
It was a very strange situation when returned home. Cooking in the house was not allowed because Kolby could not stand the smell of food. He would vomit up to eight times a day and yet he still was full of fluid. In fact, he looked really healthy. But the Nephrologist did blood work and found that Kolby was protein malnourished. The next step: a feeding tube inserted through the nose to bypass the stomach and enter the small intestines.
Your child on a feeding machine; the worst feeling ever for parent. You are so helpless and ask what is happening to your baby. Mommas fix everything. I could not fix this. No matter how much research I did, no matter how many times I screamed out loud, this disease is still there hurting my baby.
At home, Kolby said the feeding machine on a pole was now part of the family, so it needs a name. This is how "Charlie" came to be. Charlie helped a lot. Even though Kolby would still vomit a lot, he now would retain the formula from the feeds and his medicines.
Oh, the medicines. A lot of them – about 15 of them several times a day, including two for his blood pressure, which was a big problem, and three for the swelling. Meanwhile, by Spring of 2003 I had done a lot of research on the Internet and suspected that Kolby had FSGS. We talked with the doctor and decided to do the Pulse IV Steroids – a last ditch effort to save the kidneys. After starting the treatments, Kolby went into remission for just one week.
After a meeting with the doctor, we all decided that removing one of Kolby’s kidney’s held out the hope of cutting his symptoms in half. The idea was that he would lose less protein if we removed one half of the problems. After his surgery on September 11 2003, the biopsy report came back on the removed kidney. The condition was FSGS.
We all suspected it beforehand, we all kind of knew it, but hearing it was difficult. So was the result of the surgery – it did not really help at all. So in December of 2003 we decided to have a catheter placed in Kolby's abdomen to start Peritoneal Dialysis. That meant another New Years in the hospital.
Kolby started dialysis on 12-31-03, when he weighed 39 lbs. Within a week he lost nine pounds. We could not believe the change in him. His bones showed, but he felt WONDERFUL. But apparently the doctor was not too happy because he decided that it was necessary to remove the other kidney, which was on 1-12-04.
At first, dialysis at home was scary for me. I was so worried I would do something wrong and that I would hurt my son. I literally could not breathe if I thought about it for too long. But I did the training in the hospital and at home things fell into place. It really was not as hard as I thought. I had found another young patient with FSGS on the internet and kept in contact because she had done through it all and was so helpful. We also have a great support system with family and friends.
Kolby has done fairly well on dialysis. We have little problems and he still vomits. Of course, the dialysis machine had to have a name. But Kolby does not like “Chuck” as much as “Charlie” You see, “Charlie” has wheels and Kolby can move around with him. But when you hook up, literally, with “Chuck” you are together for 10 hours. Kolby now takes a growth hormone injection along with the Epo shot. He really hates them both but he understands that we have to do them.
The nephrologist was against Kolby getting a transplant donated by parents, so in the summer of 2004 we found a live donor -- a friend of my husband. He underwent lots of testing – crucial because sometimes the FSGS can return to the new transplanted kidney, even within hours of surgery. Everything seemed fine and the transplant was scheduled for November 2, 2004.
We took Kolby to the hospital early, on 10-28-04, to prepare him for plasmapheresis treatments, which involves inserting a line and washing the blood in an attempt to prevent recurrence of the disease. But the following morning we had a meeting with the surgeon, who surprised us by saying the surgery was not going to happen. The donor’s kidney would not work for transplant. It was devastating to us as parents.
But Kolby took it in stride. “It’s OK, Mom and Dad,” he said. “I will get a new kidney soon. I know.” How does a four year old get such an amazing spirit? What can we do but wonder at his courage? He has been though so very much, but he is still a happy four year old who is excited about going to school. He moves on.
Our son has been placed on the list to receive a cadaver kidney. It could be tomorrow or two years from now. No one knows. What we do know is that hope that keeps us all going. We draw strength from the courage of this little boy, this son of ours who gives names to machines and comforts his parents. Like him, we face the new year with our chin up and hope in our eyes.
You can contact us at kolbyd@alltel.net.
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