Our son Jonathan was born on September 16, 1992. This was the most wonderful day of our lives. He was a healthy baby, no problems at all, he was beautiful. For the first 8 months of his life, he was your typical baby, ate well, laughed, and as far as we were concerned, he was advanced. There was something very special about our son, and we were soon to find out.
On a Sunday in June, 1993, we took Jonathan to a church carnival. It was a very hot day; Jonathan was a little out of sorts. I thought that maybe it was the heat. He started to get real cranky, that was not like Jonathan. That Monday, I changed Jonathan’s diaper, his urine was very dark. I immediately called his pediatrician; he asked me to bring Jonathan in. I also noticed that Jonathan was not eating very well that morning; he acted very tired, almost lethargic. I brought him in to the doctor’s office, we were sent to have some labs drawn at the hospital. After the lab draw, we went home; he would call us with the results. We were scared; our beautiful little boy did not act like himself. Then came the phone call that changed our lives forever. His pediatrician told us that Jonathan was in kidney failure; he needed to be admitted to Children’s Hospital of Orange County. I felt the life being sucked right out of me. We took him immediately to the hospital, where they started IV’s, and asked so many questions. They drew more labs, and Jonathan had lost ½ his blood volume. His bun and creatinine, which I later found out were kidney functions, were 110, and 1.7. His LDH was 1600. His platelets were 45,000. We found out late that night that the doctors had diagnosed Jonathan with atypical H.U.S... Jonathan received a blood transfusion and Fresh Frozen Plasma was given to him 2 times a day for a week. I could not believe that this was happening. I would have given anything to take his place, to take his pain away. My sweet baby was holding on to dear life, and I wondered why God had done this.
After 2 weeks in the hospital, Jonathan was sent home with normal BUN, and Creatinine. We would follow up with the nephrologist. We were also told at this time that there was a chance that this could happen again. I tried not to think of this, because I was in complete denial, but in the same breath, I was going to watch my son like a hawk to make sure that this never happened again.
2 months later….it happens again. Another 2 weeks in the hospital, more plasma, more medication for his high blood pressure, and more fear.
2 months later….again. The doctors decided to put in a port a cath because Jonathan’s veins collapsed. He was getting plasma every week. This helped, but it did not prevent the relapses. From 1993, when he first was diagnosed, till November 1996, Jonathan had 20 relapses. We thought that was the worst. We found out otherwise.
During all of the bad times, I saw my son change. In 1996, he was a very wise 4 year old, who never complained about the needles, the medications, and the hospital stays. I stayed with him every time he was admitted, and kept telling him that this was happening for a reason. We did not know what that reason was, but everything was going to be ok. I did not want him to feel scared.
In December 1996, everything changed again. By that time, Jonathan was receiving plasma pheresis everyday. A kidney biopsy revealed that he needed hemodialysis 3 times a week. Within one week his blood pressure spiked to 200/138; he had several seizures. He was put into PICU, and stayed there for a month. They decided to start PD. End Stage Renal Disease was our reality.
Since December 1996, Jonathan has been on PD, which I do at home. He also has had brushes with death, in 1999, he was in a coma for 5 days, and I was told that my son would remain like this. Little did they know that Jonathan was a fighter. He had to learn to walk and talk again. He also has had 2 surgeries. In April 2001, screws were inserted in his hips because of the renal bone disease. October of 2002 his parathyroid gland had to be removed. Renal osteodystrophy is caused by and imbalance of phosphorus and calcium.
In 2007, we were told that Jonathan was done growing. Because of the Renal Osteodystrophy had done so much, his growth plates are now closed. But, Jonathan being the free spirit that he is, just tells us that dynomite comes in small packages! Jonathan will have to end Peritoneal Dialysys, and go on Hemodialysis because he has slight calcification in his Peritoneal Cavity. In March, Jonathan had yet another surgery to connect a artery and a vein in his arm so that Hemodialysis can be done.
Jonathan has been through so much in his young 16 years, but what I have figured out so far is that Jonathan has taught us patience, kindness, and most importantly the true meaning of love. Jonathan lets everyone know that no matter what happens to him and to us that we need to have faith that things can get better. I love my son with every breath I take, and I would not change anything that has happened if it meant that I would never have had the privilege of knowing him and his love.
Phyllis Ann Talbot
Jodi Kayler
Svetlana Finley
