Being a parent of a child with so many complications: including Asthma
So where do I start? I guess I’ll take it back to 2007, my pregnancy. Some moms can talk about good memories, some can talk about bad; I just know mine was a blur. Being pregnant with my son Javan, after 4 beautiful months it just went downhill. I was in the hospital every 2 weeks up until I went into labor. One of my first memories were when I went to get something to eat (at that time I was trying to finish up my last year of college in Daytona) before my next class and I just wasn’t feeling right. I remember sitting at the counter on the phone. I hung up with the call because I felt so dizzy. Made my order and told the young lady at the register that I was going to my car to sit and I’ll be back. At the time, I didn’t know when feeling dizzy you supposed to stay sitting. Whelp let’s just say I didn’t make it to the door. I literally fell to the floor loosing consciousness. When I woke up, everyone was standing over me asking me if I was pregnant and to not move, paramedics were on their way. From that day on my pregnancy became sort of a nightmare blur.
January 10th 2008, I sat in my living room with friends enjoying conversation. They left around midnight and all I can feel was pain in my stomach. By this time I had refused to go to the hospital because I was in there so much and didn’t want to go through the no eating stage. So I waited. Now it’s 8am in the morning and Javan’s dad is home from work. I’m in so much pain by this time I can barely walk, the pain would come and go. I quickly made me two peanut butter sandwiches, changed into something that I can easily take off and took that trip to the hospital. When we got there I was told that I was in labor and it couldn’t be stopped. I was having a baby almost two months early. Here is where it got strange, the doctor who was over NICU (Neonatal Intensive Care Unit) had passed the day before which caused the hospital to not take anymore NICU babies and I had to be transported to Winnie Palmer Hospital in Orlando. On the way there the paramedics got lost, stopped at an abandoned churches chicken to make a phone call for directions (how I know, while doing the breathing exercise, I looked up and saw the sign. I was sooo confused). Finally get to the hospital and there you have it, around 2pm I had Javan! My baby boy! It was a c-section due to him not being turned yet but all in all I heard that cry and said to myself I have a healthy baby. Now there was a few complications between the time of me getting to the hospital in Orlando and having him but for the most part he was healthy. When I saw him he had no eyebrows, no finger or toenails due to the timing but was the most beautiful baby I’ve ever seen.
After being in the hospital for a few weeks, it was now full time mommy. He haven’t even been born two full months and we had our first sick doctor visit. Javan began to become feverish and was breathing heavy. I took him to the emergency room and he was diagnosed with bronchitis. You can see him breathing from his scalp as it was going in and out. The doctors then warned me of him later developing Asthma. For the first two years of Javans life he struggled with so many problems. There was acid reflux. He couldn’t hold down any foods/milk for long. He had test done and X-rays showed his food trying to travel to his lungs. Then there was sleep apnea, JAVAN wasn’t breathing in his sleep from seconds to a minute due to his adenoids being huge. He had to get surgery to get them removed at 10 months old. I remember taking him to the doctor for a regular visit and had to immediately go across the street to the hospital where there were surgeons waiting due to JAVAN having a hernia. Yes he ended up getting surgery. He’s reached 1 year and his speech was a little off, after several doctor visits, therapy sessions and motor skill sessions, JAVAN also was suffering from a lost of earring due to too much fluids. He ended up getting surgery where they put tubes in his ears. By the age of two, this is when he got diagnosed with Asthma. He had a minor asthma attack that we just thought was a cold from all the coughing he was doing. It seemed like every 6 months it was one situation after another. We never got to enjoy Javan the way other parents would with a healthy child. By the time Javan was 4, he had his first major asthma attack. His breathing was so bad he started breathing from his stomach, as the doctors would say, “Javan went into distress”. This was his first ICU stay over but it wasn’t the last.
Every year at least twice he was either admitted into the hospital or in ICU. The beginning of the school year was hard because after the first two weeks he would get sick and be admitted in the hospital. Through the course of his toddler years Javan has faced several surgeries, lost 40% of his hearing, got tested for allergies and was diagnosed with a high allergy number where he’s allergic to everything including milk, eggs, cats and dogs. He had trouble with comprehension and his motor skills, went through different sets of therapies and was told that he would be delayed. As his parents, once we found out things he was struggling with, we went on and tried to fix as much as we could before it happened again. Unfortunately, his asthma was ongoing and took several steps to get to where we are today.
February 17, 2018 took a big turn. Javan had been coughing all day. He was placed on his nebulizer but his asthma just wouldn’t be controlled. I was in the shower and he needed help but couldn’t talk. Through the fog on the mirror he wrote “HELP ME”. When I saw that, I immediately rushed to him and took him to the hospital. While in the emergency room, the nurse was telling us that a kid his age came the day before but didn’t make it. They were too late, the kids organs shut down and he had a heart attack. All from an asthma attack. This put us in great fear of Javan's life and future. The doctors and nurses were working on Javan for hours and nothing was working. When they were controlling his breathing, his pressure went up. When they worked on his pressure, he started to loose oxygen. Around 7pm the night shift came in and a respiratory nurse that was used to Javan and his condition saw him. She knew exactly what to do. She was Godsent. All you see is her bringing in a big oxygen tank to control his breathing and giving him what I like to call the epi pen in a syringe. You clearly saw his chest move outwards as if he was taking in some fresh air. They were now able to control his breathing.
Now off to pediatric NICU department. After spending a week in the hospital. We’ve learned so much from his asthma triggers, one of which him having adhd and generalized anxiety are also emotions that can trigger his asthma. Once javan was better, I asked him how would he like it if we wrote a children’s book about his disabilities, the first would be about his asthma. He agreed. Now as far as his asthma goes, the doctors found a way to control it through a shot every two weeks. This shot isn’t like your allergy shot where you come in, get it and leave. You actually have to see the doctor and wait for some time to make sure there’s no bad reaction.
Since 2018’s scare; Javan has not been admitted to the hospital for asthma and his health has been under control. He has written 3 books on Asthma, ADHD and Anxiety. The Miami Dade County Public School district has recognized him, Miami Gardens has proclaimed September 29th as “Javan ALLISON Asthma Awareness Day”, JAVAN has been the youngest advocate for the National Asthma and Allergy foundation and more.
Everyday is a challenge with JAVAN rather it is keeping his asthma under control, working with him with his mental health and keeping him afloat with his education. Through it all he is a fighter, he maintains good grades, in the magnet program for theatre, plays sports; primarily football and is continuing to educate and bring awareness with the 3 A’s. As a parent of a child like JAVAN, it’s all about studying your child, getting to know the ends and out, the good and the bad and most of all their mental health. I never solely go by what other parents say because each child is different. The sleepless nights of being Javans doctor, teacher, motivator, pusher and coach; I would not say it was easy. What I will say is it’s a learning experience and I’m glad that I am able for the sake of his future. It takes a lot of sacrifices and pride putting to the side.
This blog is dedicated to JAVAN on his day September 29th to not only help bring awareness but to let other parents know that they are not alone. For more information about JAVAN, you can visit his website at www.javanallison.com