March 21, 2017 Billy received his double lung transplant at Tampa General Hospital in Florida. As he got better, Billy and I (Lakota) planned The Agustin Foundation to help Cystic Fibrosis and Transplant patients just like him. This foundation is being created to financially, emotionally, and spiritually aid Cystic Fibrosis and transplant patients and families.
“Greetings to all, I am Bridget, Billy’s mother. It’s my pleasure and honor to introduce and give my sons testimony of his life.”
— BRIDGET DESERIO SOTO, CF PARENT ADVISOR
Billy was born on November 12, 1993. His birthname is William Ismael Agustin. Billy was his nickname since he was in the womb. Everyone called and knew him as Billy. I called him “Booboo”. He never complained about his cute little nickname that I only called him. Billy had gotten Booboo as his nickname when he was only one year old. A neighbor’s dog had jumped on him, being playful, but knocked him down. After that event, every time Billy saw a dog he would say, “Booboo!”. Billy, after a few times of seeing that dog, his eyes would light up with a smile on his face and point and say “Booboo!”. He looked so adorable, so I nicknamed him “Booboo”.
Going back to when Billy was just born, he was pretty healthy, but had jaundice. His primary doctor just said to sit out in the sun with him for about an hour per day for the next few days upon leaving the hospital. A week after coming home, I had taken Billy for his first checkup and no more jaundice.
Around 8 months later, I had noticed that Billy was not the same as other babies. He would want to eat nonstop; his bowel movements were very smelly and loose. His belly was very extended. Around 9 months, he was in the hospital due to having a respiratory infection. RVS. After that, Billy would continue to have the same terrible bowel movement’s and have breathing issues.
I, being his mom, would take him to the doctor, which was at the clinic. The clinic would tell me that I was young and needed to learn that babies have smaller noses than us, so it sounds like they are breathing heavier and that he just had a cold.
At 12 months, Billy seemed to be eating nonstop and not gaining weight due to all of his bowel movements. I had told the doctor that I was very concerned about my baby. That time, Billy was diagnosed with an upper respiratory infection and given antibiotics. Two weeks later, he was a little better but I was not happy so I took him back to the doctor. The doctor gave a stronger dose of antibiotics. A few days later he got better.
Just a couple of months later, Billy had to be back on antibiotics for another upper respiratory infection. He was still having bad bowel movements, and once again I stated to the doctors that Billy didn’t seem like a normal, healthy baby. The doctor wasn’t very kind and didn’t take time to really give good care to my son and wouldn’t talk to me. The doctor would say again I am young and know nothing about babies and left the room.
At 14 months, Billy had gotten very sick, his breathing was fast and he was wheezing at times. It looked like he couldn’t breathe. I explained that to the doctor and he said, “Look, stop dramatizing things if he looked like he stops breathing he would be dead.”. I said, “But Billy does. His fingernails turn purple/blue and looks like he is struggling.” The doctor gave him antibiotics and started him on a breathing machine to do albuterol treatments.
A few weeks later, I had to put my Booboo in daycare because I needed to find a part time job. On the second day of Billy being at daycare, Billy was rushed to the local hospital. The daycare said that Billy was not breathing and they called 911 and he was getting rushed to Manatee Memorial. Billy was then diagnosed with having asthma, and for his bowel issues they put him on soy milk. The doctor then gave a referral to All Children’s Hospital thinking he maybe had asthma. I made the appointment and was seen two to three days later.
I spoke to the pulmonary doctor about all of Billy’s issues and the doctor said to taste his skin. I remember looking at him puzzled and laughed. He said, “Go ahead, please.”. I did. I had replied with, “He tastes a little salty.”. The doctor asked if anyone in my family had Cystic Fibrosis. I said, “What is that?”
He explained and said he wanted to test Billy. My Booboo was tested and a few days to a week later, I got a phone call that changed my life forever. I was told Billy had Cystic Fibrosis. I was so scared because I did some research as I waited for the results, but was happy to know that I wasn’t being dramatic as his primary doctor said and when I had answers and ways to help my son.
So at 15 months old, Billy was then seeing a pulmonologist, GI, and ENT for his Cystic Fibrosis. I also had changed his primary doctor.
At the age of 8, Billy had his first sinus surgery and by the age of 13 he had five. Cystic Fibrosis affects a lot of the body, not only lungs and GI. When Billy was 13, he had gotten a medaport placed due to all of his veins being blown.
At 16, he had a wedge of his lung removed due to infection of mold.
From 15 months to the day Billy had his double lung transplant, he was in and out of the hospital for 2 week clean outs about every few months. One nurse said he was a frequent flyer.
Billy never complained. All of the nurses loved him because he was pleasant, happy and easy going. He listened and did all treatments. Billy had learned to work all of the machines in the hospital at the age of 11. Billy still did all of his school work during hospital stays and continued to be an A student. At times, he would have extended time out of school and have a teacher come to the house. It was called “Hospital Home Bound”.
Once he was able to return back to school, he did with a smile on his face. During his middle school years, you could find him bike riding, skate boarding, and playing soccer. When he got out of breath and got tired, he would take a break, do his inhalers, get up, and play again. He never let CF get the best of him.
Billy had many friends and family that loved him and would wait for him while he did countless medications, breathing machines, and his chest airway clearance. It took about 45 minutes, 3 times a day for Billy’s normal routine of care.
During high school, Billy could no longer play soccer. His lung functions were declining and he would get so tired and out of breath that he could only watch others play. It broke his heart, but he said, “One day, when I get a transplant, the first thing on my list is to play soccer again.”
Billy graduated high school and earned his AA and BA. During his last 3 months of getting his BA, he got called to get new lungs. Billy was only on the list for 3 ½ months. After transplant, he finished school but had to take 3 classes over only because he missed 3 weeks of school due to having his transplant. Billy graduated with honors and made it on the deans list.
Billy never let anything stop him or get in his way. He went over and beyond to prove to others that even if you have an illness, you can succeed in life.
Before transplant, Billy had lost faith in God. He would say,
“Please don’t try and make me believe in Him.” and would run away when people prayed and spoke about Jesus. During Billy’s transplant he wasn’t doing good and was on two forms of life support. The day Billy was doing a little better and was taken off one of the forms of life support, he texted me on my phone. I was having soup in the hospital café. He texted “I now believe in God and he is so beautiful and bright”. I left the café and ran to Billy’s room. Billy was in his bed crying, but tears of joy. He said,
“Mom, God is real. He saved me.” Billy said, “He is tall, bright and beautiful.” He said He was so bright he couldn’t see His face. Billy went on and said he also saw Hell, “It was so scary but that’s when God appeared.” Billy went on and said, “God hugged me while I was crying and touched the back of his doctor.”.
Billy’s faith forever changed that day. Billy’s last two years after transplant were blessed. He played soccer again, went on trips, attended church, got baptized on Easter Sunday, had his bulldog and him living together and found love. He was planning on getting married.
The one thing that never changed about my son was he always wanted to help people and did. If I ever needed help in any way, whether it be groceries, gas in my car, etc. . . he was always there to help with a smile. He never expected to be paid back for anything and did everything out of the goodness and love in his heart.