“Born on March 9, 2010, Ricky entered this world a warrior. Ricky got stuck on his way into the world, and a nurse jumped on top of me to help push him out. Before the nurses could hand Ricky to me for skin-to-skin contact, my body turned cold. I could not stop shivering and that soon turned into intense shaking, tremors, and shortness of breath. The nurse handed Ricky over to his dad, as she harshly scolded me for shivering, telling me I needed to calm down and breathe, but I was so cold. They took my temperature and it was 104, my heart rate was over 200 beats per minute and the nurse said I was tachycardic. Knowing something was seriously wrong, I looked at Ricky’s dad and told him to call my mom. I was out after that, I had lost consciousness. When I finally came to, I found out Ricky also had jaundice. He overcame these minor obstacles. I was on the mend and we were discharged home.
Ricky has always had a smile that would light up the room, even as a newborn. Ricky is a go-getter, a do-it-myself type of kid. This kid took it upon himself and under 2 years of age to just start using the toilet. At 4 years old, he came into the house from the garage with tools in his hand and the training wheels from his bike. He proudly stood there and said, ‘Mom! I took my training wheels off, I can ride without them.’ I said, ‘Okay, let’s go outside and test your improved bike out.’ Low and behold, he did it. He was riding without training wheels before his sister, who is 2 years older than him. As with all kids, there were some challenges along the way. He is short-tempered and can lose patience when he is not able to do something or when someone doesn’t understand what he’s saying. At times, this would result in having to get him up over my shoulder and carry him out of an establishment. With persistence, Ricky’s pediatrician finally agreed to send him for a speech evaluation. As a behavior analyst and someone who has worked with children diagnosed with Autism and adults with special needs, I was sure this was a contributing factor to his behavioral episodes. Over time, Ricky outgrew his tantrums and learned to self-regulate his own behavior. He is the only kid I know who will put himself in a time-out, go think about what he did, and come back and apologize, acknowledging what he did wrong.
As this maturity developed, more of Ricky’s kind-hearted and loving personality shined through. If one of his friends did not get a special treat, he would give them his. I will never forget one time at Boy Scouts, when Ricky’s peer did not get a shaved ice, he handed his over because he did not want to see his friend upset. He told me, ‘Its okay, Momma, I don’t need one, I can get one another time.’ Ricky, being all boy and a thrill-seeker, always climbing, riding his skateboard and BMX bike, has been prone to falls and accidents. In mid-September of 2018, he was a few houses down on our street riding his bike with his older sister and friend when he tried to hop a curb and fell off his bike, breaking his collar bone. This was the third time his collar bone had been broken, but it was the worst. Ricky was devastated to hear he could not do ANYTHING other than walk until at least December. During the week of October 15, 2018, he woke up Monday morning with his face swollen from what appeared to be bites of some sort. However, his face was so swollen I took him to the doctor to be checked out. I have never seen anything like that on him. The doctor checked him over and said they were mosquito bites. He prescribed some medication and along we went.
Thursday that week, we had to go for our collar bone fracture check-up with his orthopedic doctor. Ricky was very optimistic and was certain they were going to tell him his collar bone was healed and he could resume hitting his 100-mile goal at school for the 100-mile club. Oh, how devastated he was to be told it was barely starting to heal and fuse together. To cheer him up, I took him and his cousin to breakfast after his appointment. The boys sat and played their video games together while I drank my coffee and wrapped up a few last-minute work things before I left for Reno with my fiancé, Dave. I will never forget that day. I can remember almost every little detail. It was the last day I saw my beaming smiling face son before he was forever changed. I dropped him off at my parents’ house. He and his sister were staying the night there and my mom was going to take them to school the next morning. It was their dad’s weekend, so he would pick them up from there. When I dropped my son off, he whined a bit and asked me several times to stay. This was not like him. I stayed for a little bit, but I was trying to get back home so Dave and I could beat the work traffic out of town. I kissed him goodbye, and he stood in the doorway of my parent’s house as I pulled out of the driveway. I blew him a kiss. He caught it with his right hand and placed it on his cheek. He blew me one back. I caught it, put it to my cheek, and shouted, ‘I love you, now go back inside.’ I waited for him to close the door as he waved me off.
Our road trip to Reno was perfect. We woke up Friday morning next to a creek, packed up camp, and hit the road. We were in remote areas, which meant we didn’t have very good cell service. I checked in with my mom after the kids were picked up from school. My mom said my daughter, Gabby, was complaining of a sore throat and Ricky came home complaining of a headache and actually screamed a little bit from it. My inner motherly instinct radar was alerted. I called my kids’ father and suggested he take them to Urgent Care. I was certain my daughter had strep throat and figured it wouldn’t hurt to have Ricky checked out. Ricky was given Tylenol and went to lay down. When he woke up, he said he felt better so my mom did not think anything of it, and he even told his dad he felt better. Later that evening, my kids’ dad kept trying to call, but due to the poor cell service, the call kept dropping. A text came through that said, ‘Get to the hospital now.’ I seriously thought it was a typo and he was telling me he just got to the hospital to have the kids checked out. When I was finally able to answer one of his calls and actually connect, I will never forget the words that came out of his mouth. ‘GET TO THE HOSPITAL NOW! IT IS YOUR SON, HE IS UNCONCIOUS AND FOAMING AT THE MOUTH, THEY CALLED A CODE BLUE.’
By this time, Dave had pulled over to the side of the road, and while I was talking to Ricky’s dad, Dave immediately called my parents to tell them to get to Kaiser Riverside. I was shaking and screaming ‘No! Not my baby, not my Ricky.’ We turned the car around and headed for one of the longest drives of my life. We checked to see if we would be able to get a flight from Reno to Ontario. However, they no longer book last-minute flights. We drove for six hours. I cried, I screamed, and anxiously tried to get cell service to stay updated with what was going on. I knew it was bad, I could hear it in my dad’s voice. He told me, ‘It doesn’t look good, Angela. We need to pray, that is all we can do.’
Earlier that evening, Ricky was acting fine. Gabby laid down for a nap and their dad decided to take them to the doctor the next day since everything seemed okay. They sat down for dinner when Ricky abruptly started screaming and grabbing the sides of his head, saying his head hurt. He felt dizzy and had to throw up, which he did start doing and lost consciousness. Ricky was rushed to Kaiser Riverside. As his dad carried Ricky’s limp and lifeless body into the hospital, a code blue was called. They quickly stabilized him, however, they could not proceed with any further test due to not having pediatric doctors available. They were waiting to hear back on whether a bed was available at Kaiser Fontana or if he would need to be transferred to Loma Linda University Children’s Hospital (LLUCH). The trauma doctor on duty that evening at Kaiser Fontana monitored him via video until word was given to transfer him to LLUCH. Ricky was rushed by ambulance to Loma Linda, where I touched bases with the Neurosurgeon on duty and was informed via phone my baby boy had a mass on his brain due to a massive brain bleed. I didn’t know what to do, I felt so helpless. I took to social media and asked for prayer. That was all I could do. There was so much blood and he was in acute respiratory failure. The surgeon recommended placing an external ventricular drain, which is a temporary gravity feed system that allows drainage of fluid on the brain. I authorized this procedure via our phone call, as it was the only thing that could be done at that time, due to how unstable Ricky was.
Dave and I finally arrived at the hospital around two in the morning. Nothing could have prepared me for what I was going to see when I arrived at the hospital. As I came off the elevator and turned the corner, the waiting room was full of family and friends. It was like Ricky was already gone and everyone was there to say their goodbyes. His nurse immediately took me back to see him. No parent should ever have to see their child like this. Ricky was hooked up to life support, tubes and wires were everywhere, coming off his body from his face, arms, head, and groin. He had a catheter and the EVD in the top of his head, along with all these tiny wires monitoring his brain waves. I cried. I touched my baby, I held his hand, and I asked, ‘Why? Why him?’
We found out in the next day Ricky had a rare disease he was born with called Arteriovenous Malformation (AVM). Basically, the capillaries going between this one particular vein and artery were deformed, causing high-pressure blood flow. Over time, the walls of his veins burst, causing a massive hemorrhagic stroke in his cerebellum. I had never heard of an AVM and my sister immediately jumped on the internet and started researching. I was able to connect with the Aneurysm and AVM Foundation (TAAF) and receive guidance in seeking a second opinion. We were called in for a ‘family meeting’ and as I nervously sat down in this tiny room full of people, my gut told me we were not going to be given good news. We weren’t. Ricky’s neurosurgeon told us due to the severity of Ricky’s bleed and the location, he likely would not survive. The brain bleed most likely severed his brain steam and if he survived, he would remain in a vegetative state for the rest of his life. What the doctor did not know was that earlier that day, I had seen with my own eyes Ricky squeeze his hand into a fist when the nurse was suctioning his mouth. I brought this to their attention and was told it was involuntary movements. It was suggested it may be best to remove him from life support.
I could not stop thinking about how almost every time his mouth was suctioned, he would clench his fist. When visitors would come to see him, his heart rate, blood pressure, and pressure in his brain would rise. I would ask visitors to keep the talking and noise down, yet I was told he could not hear us. Ricky was giving us signs he was there fighting and I was going to stand by his side and advocate and fight for him when he did not have a voice to do so. Days turned into weeks and weeks turned into months. I never left his side. Ricky was at LLUCH for one month and once he was stabilized enough to be transported back to Kaiser, they abruptly transferred us. I tried to fight it but at the end of the day, Kaiser was our insurance, and we had no choice.
It was a rocky transition. Kaiser did not do things the same way, and I often felt like I had to watch their every move. I was so anxious. Ricky was weaned from a medically induced coma and paralytic and was given a chance to wake up. He would open his eyes. It started as a blank stare and slowly turned into him looking at stuff. He was so weak and fragile from being in a hospital bed for so long.
I had to fight for Physical and Occupational therapy at his bedside. Often times, I was told he didn’t participate enough and they didn’t want to work with him. I found a great team that was willing to go the extra mile for him and work to stimulate his brain. I made sure to exercise his legs and limbs so he wouldn’t lose the ability to walk in the future. We celebrated Thanksgiving in the waiting room and counted our blessings Ricky was alive. Ricky was extubated, had his feeding tube placed, and went through a spell of frequent projectile vomiting. I argued with the physicians it was a milk intolerance (which was a long argument I didn’t get resolved until he came home and was seen by a doctor outpatient). Once Ricky was stable, they quickly set out to discharge us, even though I didn’t feel he was ready to go to the rehab center.
Just before Christmas, we were transferred to Totally Kids Rehabilitation Hospital, where Ricky was required to participate in a minimum of 3 hours of therapy 5 days a week, which he frequently refused to participate in. He was so weak he could not even hold his own head up. He was not able to speak and did not seem to enjoy any toys or movies. We spent two months at TK and ultimately, it was decided he was not participating enough so we were discharged. While at TK though, Ricky did start to gain head control and was able to start eating pureed foods.
Heading home from the hospital was not the same as life had been before. I had to resign and put my career on hold. We had to move out of our two-story home that was no longer appropriate for Ricky’s needs and stay with my parents. It was a bittersweet change for all of us. Once we got settled in, something one of the nurses said to me, ‘When you go home, lay him down on the floor like you did when he was a baby. Let him move and be free.’ That is exactly what I did. Every day, Ricky grew stronger. He went from laying there to trying to sit up to rolling over. It was like having a newborn and going through the developmentally milestones all over again.
Ricky went back to his original neurosurgeon where a craniotomy with embolization was agreed to be the best treatment to remove his AVM. The first surgery left behind some residual AVM so 2 days later, he had to go back in for a second craniotomy.
Ricky started outpatient rehab, which was placed on hold except for monthly check-ins, due to his resistance to participate. Ricky started speech therapy and goes twice a week for Neuromuscular Electrical Stimulation (NMES) Therapy. Ricky is currently eating and drinking a normal diet without any thickener. His voice came back on Christmas Day 2019. It was soft and he spoke slowly, starting with one to two-word phrases. Today, he is speaking in full sentences. There have been many roadblocks along the way with insurance, disagreements with the medical professionals, medical bills, not working, and struggling to make ends meet.
This journey has not been easy. It is not only tiring and stressful for me, causing tons of anxiety and worry I am doing the best and all I can for Ricky, but tiring for him as well. Traumatic brain injuries come with a flood of behaviors. You never know when Ricky’s brain will go into overload or he will explode into a fit of rage. This results in him screaming and yelling, hitting, kicking, biting, and trying to hit his head into the wall. It breaks my heart when he falls and tells me I don’t understand how much it hurts to keep falling. He is absolutely right, I have no clue. All I can do is stand by his side to support him every step of the way. This journey is his journey. He is still the go-getter, the do-it-himself type of kid, the fighter. He never lost his strong will and determination. His smile continues to radiate through any room he is in. He is thriving and making remarkable progress. I try to give him the freedom he needs to work through rehabilitating himself and trying to provide what materials I can to enhance that progress — from the boy we were told wouldn’t survive to the boy who is a walking and talking miracle.”
This story was submitted to Love What Matters by Angela Schmidt from Pinon Hills, CA. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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