My son Joshua turned 6 years old in May against all odds. He is my miracle baby and I will tell anybody that. When I was pregnant with him and I went to find out the sex of my baby, I was told that one of his kidneys was slightly enlarged due to posterior urethral valve, which is a flap that usually dissolves away during development to allow for the free flow of urine, but it never went away and it was causing the urine to back up into his kidney and cause it to become larger. I was given the option to terminate my pregnancy or continue to monitor and see if it improved. To me, termination was not even an option. My son was already a baby boy, I couldn’t even believe that was legal, but it is. As the months passed, the kidney slowly got worse and Joshua began to lose the fluid surrounding him in the womb. The doctors gave e a very grim prognosis and told me to prepare for the worst. I was going for weekly stress tests, but he always seemed to be doing ok in there despite everything.
This being my first baby, I didn’t know what to do but pray for good health. According to the doctors, they didn’t expect him to make it out of the delivery room. I was scheduled for C-section delivery at 39 weeks because they did not want me to go into labor with him. When I had my son, he was almost 13 lbs from all the extra fluid he had on board. He could not breathe on his own because his lungs were not able to develop due to one of his kidneys being so big. My son was on an oscillator, which is an advanced ventilator. When they tried to put him on the ventilator, it punctured his lung and they knew he couldn’t handle it so they had to use an oscillator. I was told that if the oscillator didn’t work, there was nothing they could have done. Thank GOD it did though. It did! He was on that for a few weeks and he had to be completely sedated so that he didn’t try to breathe over the machine. Then he was placed on the ventilator. One doctor told me that she didn’t ever think that he would come off the ventilator. I couldn’t wrap my head around that because how could a person live and be on a ventilator. She was wrong though, my son was only on the ventilator for a few weeks too.
My baby was born a fighter and nobody that seen him when he was born can even believe that he’s made it as far as he has. He has had more surgeries than I can count. Multiple lines, broviac placement to reduce the IVs and blood draws, catheter placement for dialysis twice, surgery for fluid removal, transplant, ureter implantation, g- tube placement, and others I can’t even think of at the moment.
Joshua was in the hospital for 5 months after he was born. First the NICU, then the PICU, then he was on a regular floor, which is where they taught me how to do his dialysis. I performed peritoneal dialysis on my son from the time he was 5 months old until he was almost 3 years old when we finally got that CALL. It was the third time we had gotten a call, but this time, the doctor said, “This is it, this is the one we’ve been waiting for.” I was scared and excited at the same time. I was crying as I gathered our clothes, thinking that when we finally came home our whole lives would be different.
When we started out, it was my fiancé, myself and Joshua. By the time we got this life changing call, my fiancé had been killed, and it was just Joshua and I. We had waited so long for this day. LJ (Little Josh) was in surgery for about 16 hours and when he came out, they told me he needed to sleep because he would be in a lot of pain. We stayed at Boston Children’s Hospital for months, and then when we were finally discharged, we had to stay at a family lodge for weeks before we were allowed to come home. It seemed like forever and my baby changed so much. He was a little chunky, fat baby when we started out, when we came home, he was slim and not such a baby anymore. We have to go back and forth to Boston a lot, every few months to be exact. The doctors there were amazing though, I really thought they were great. They are a good hospital and I am glad my son got his transplant there.
Life after transplant of course still has its ups and downs. Transplant is a treatment, not a cure, and that is the most important thing that has stuck with me. There are still a lot of medications and blood work, still a lot of doctor appointments. The one thing that I am glad for is that my son does not have to be stuck on dialysis for 12 hours a day anymore. He is doing well, and he was actually doing really well even when he was on dialysis. He just had a very big growth spurt after his transplant, and it shocked all the doctors. It has definitely been a learning process, and there is always more to know. I can say that I have learned a lot though and I am grateful to have my wonderful son as my teacher.
To read more about Joshua’s Journey click here.