Jonathan’s
Story
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 had kidney failure; he needed to be admitted
to Children’s
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. Ed 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 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.
Jonathan has been through so much in his young 10 years, but
I had figured out why God sent him to us. He 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.