PLEASE HELP SUPPORT MY LITTLE LION!!!
Eddie suffered a major brain injury from a near-drowning when he was 21 months old on June 19, 2013. I was on my way from work to pick him up, when he was left unattended in the home where he was being watched. There was a swimming pool in the backyard without a security gate (although it was told to me there was one). He suffered a severe anoxic brain injury due to a prolonged period without oxygen, resulting in a diagnosis of severe quadrispastic cerebral palsy.
Please learn from Eddie how dangerous swimming pools can be, and how easy it is for a child to slip away when you think they are in the other room, or being looked after by someone else. If you have a backyard pool, you must put a permanent safety gate around it, no matter how ugly you think it is. You can NEVER be too safe with your children. Please share Eddie's story and spread pool safety awareness!
I included a lot of pictures to have a photo journal along with the written story of Eddie's healing journey. You will see that my father, Eddie's beloved Papa Wayne, is in many of them. He helped me raise Eddie since he was born, and the two of them simply adored each other. He was an absolutely wonderful father and Papa, and the epitome of a good man. My father was my best friend and rock of support. He died tragically on January 11, 2017. The void is huge and the pain remains sharp. I never felt like a single mother until he passed away, but he taught me how to have faith, be strong and persevere, trudge through the tears, and to never ever give up.
This picture was taken in April 2013 on a family vacation. The next picture was taken just two months later...
It has been a painful journey filled with a lot of despair, but a lot of joyful miracles as well. We were first told Eddie wouldn’t make it a few days, that he would never wake up, never breathe on his own, never see, never hear, never be aware... never, never, never. Doctors kept telling me that I was in denial and needed to just let him go. But I refused to believe them, and so did Eddie. He survived and he woke up!!
Unfortunately, he is still very disabled and medically fragile. He is on multiple medications to regulate his brain and neuromuscular function, as well as to treat issues in other systems of the body, which were consequences of the brain injury. He has a feeding tube because he cannot chew or swallow food. He has a tracheostomy tube through his neck to help him breathe, and to allow us to clear his throat because he cannot cough. This trache tube connects to a respiratory ventilator, which breathes for him when he cannot breathe on his own, and helps keep the lungs open to allow more oxygen into his blood.
For the first 2 years after his brain injury, he lived at a subacute healthcare home for children. He was in a coma for the first 3 months, and it took time for him to come around to full consciousness and awareness. After two years, I finally took him home with me. I dropped him off June 19, 2013 to be taken care of while I was at work. I sped to a hospital emergency room that evening instead of picking him up, and I finally took him home on September 12, 2015. This was the greatest day of my life, second only to the day he was born!
But it ended up very different than I hoped. He qualified to receive 20 hours a day of home nursing, but qualification does not mean that you will actually have nurses for all those hours. The home healthcare system is broken. There is a lack of nurses, it is inconsistent, and undependable. Don't get me wrong, there are some great home nurses, and we did have a few, but they all either moved, or went a different route in their lives. After a year and half, a week after the passing of my father, I had to make the hardest decision of my life, which was to move him back into a healthcare home for kids. It is literally impossible to take care of him on my own. If anyone can do it, I can, but I cannot do it without help, without sleep, and without being able to work. He literally needs to be watched over every minute 24/7. I am a single mother living alone, providing for my son without help, and without family nearby. His dad does not provide for him, and is not in Eddie's life anymore. I strive to be the best mother I possibly can. I have my elbows and knees deep in everything involving him. When I am not working or taking care of outside things, I am there, often falling asleep with him at night. This place is great, but it is a care home, and there are limitations to what I can do with him, such as not being able to just put him in my car and go to the beach or movies, or take a road trip. But first comes first, and that is his basic daily medical care watched over every minute by a team of nurses. However, I refuse to have him live his life in a healthcare facility. I do not know how, but I will figure out a way to bring him back home one day, even if I have to go knocking at the governors door to change the system. I'll figure it out though. The answer will be put in our path one day. Eddie is a miracle and I have faith we will live together again!
Remember all the doctors said he would never breathe on his own again? Well, he is now doing exactly that!! We started weaning him off the vent about 5 years ago, starting with just a few minutes at a time. Slowly, he built up to hours, then daytime, then overnight, more days, weeks, months. When he moved into the home he lives in now, he was sick at the time and was struggling, so he was put on the ventilator temporarily before he moved. For some reason, he was kept on the vent. When a patient enters a hospital or healthcare facility on a ventilator, they are automatically considered fully "ventilator dependent". I learned that there are laws and protocols and processes that need to be followed to get him back off. Again, maybe I should go knock on the governor's door. But after a bit, we started to taper him again. He now is off the ventilator completely, and is breathing normal room air, while keeping his blood oxygen saturation at good levels. The only thing he has connected to his trache now is an aerosol humidifier, which can be removed. The air that goes to the lungs through the trache, versus through the nose and mouth, is dry and irritates the lungs, so a humidifier needs to be used to add moisture to the air. After 6 1/2 years, we finally got the doctor's order that we had been waiting for, and were told we'd never get. The order was simply "discontinue ventilator". This order means the vent is gone, taken away, not needed anymore! When he was off the vent at home, the doctors' orders were to still "keep ventilator on standby as needed" and always have it with him. This is HUGE!!!
A baby boy once diagnosed with respiratory failure, chronic lung disease, and ventilator dependence is now a boy with normal healthy respiratory function, no lung disease, and no ventilator following him around everywhere. He has finally done it!!! He fought so hard, and now he BREATHES!!! Completely breathes... all the time... on his own! By the grace of God, I have witnessed a true miracle in my child! It is so easy to take for granted what a single breath means, its importance, and how much health surrounds us in the air we breathe. Eddie has taught me that a deep breath is precious. It is life.
These pictures show that the ventilator is officially gone. See the big hole and empty shelf in the cart next to his bed?! That is where the ventilator used to sit. The only things he is now "connected" to (which can be disconnected) include monitors, the food pump, and an aerosol humidifier. It's still weird to see the absence of a ventilator, the absence of a life support machine by his side. Yet, so very exciting and wonderful and comforting. He did it!! My strong brave little lion did it!!!
Eddie is fully aware and present, can see and hear, and knows people and what goes on around him. However, he has minimal control over his body, and he does not talk, although his face is very expressive. He does not communicate like we do, but does have his ways. I am currently working to obtain adaptive communication tools to help him be able to express himself.
Because of his physical disabilities, he needs constant therapy, and a lot of it. Insurance covers basic PT/OT, and we are fortunate to have great therapists. However, I pay out of pocket to have extra therapists and specialists, including sensory-vestibular therapy, Tomatis method, CME, craniosacral and polarity work. He has a great team around him, of whom he loves. They help him feel more in control of his body, stronger, more expressive, and more confident. These pics are some of the amazing therapists we work with, whom Eddie responds to so positively. But I'm struggling to pay for all this, and right now the extra therapies are limited because of costs I cannot cover. I absolutely hate not being able to provide helpful treatments for my child. I hate potentially slowing his recovery because I cannot afford to move it along quicker. I need to raise money so he can continue working with them, and this means not being afraid to humbly ask for help... for your help.
Because of the severe spastic quality of the cerebral palsy he was diagnosed with, his hips became dislocated over time. Last year in August 2018, he had to have major surgery on his hips, which was successful. However, due to his brain injury, he cannot regulate his blood pressure, and it became frightfully out of control from the overall trauma of the surgery. He was needing constant acute IV medications to regulate his blood pressure, and the doctors didn't know if he'd make it. But once again he triumphed and survived! My boy!!
Because his hips are better, he can now learn to stand again, and hopefully walk! We are now in the process of getting him a stander, which will help his lower body gain strength to bear weight, improve his core and posture, as well as improve his head and neck control. Insurance will only provide for a basic stander, if at all. With that one, he has to be transferred by someone else from his wheelchair to the stander, where he is laid down flat, then rotated up into a standing position. There are also no wheels or handles to move him around. The one I want for him is the EasyStand Bantam Stander, which costs over $2000, and I'd have to pay out of pocket. This converts from sitting in a chair to a standing position. So, he can both sit and stand using one thing. He will learn how to go from sitting to standing on his own, and vice versa, instead of someone separately moving him between his wheelchair and the stander.
The following pics are copied from the website, I do not know the little girl in the picture, but it shows how it can go from a stander to a chair. Very cool!
Unfortunately, as said in the beginning of this story, in January 2017, we suffered another tragedy. Eddie’s beloved Papa, my father Wayne, passed away suddenly. They had such a special bond since Eddie was born, nobody could get in the way of it. It was an indescribable heartbreak for both of us. He was our rock! He helped me raise Eddie, and after Eddie got hurt, my father held me up and took care of both of us. His immense love and support was critical to Eddie’s recovery and my endurance. I struggle daily missing him. This is simply too much sometimes to do alone, to do without him. His passing has left a huge void, and he is painfully missed every day.
What happened to Eddie, and what was taken from him, is one of the worst things a child should suffer, and a horrible thing for a mother to endure. However, because of what my father taught us about determination, overcoming obstacles and finding the miracles, Eddie and I have survived his death too. We continue to be resilient and push forward, carrying Papa’s spirit with us. Eddie is my biggest inspiration, the love of my life, my soulmate, my sunshine, my everything!
And look... he is even in school and graduated kindergarten!
I made a promise to Eddie that there will never be anything he needs and deserves, that he will not get. But I need help fulfilling this promise. Eddie’s costs out of pocket are very high, and I do it on my own. There are medications not covered. His eyes do not close, and he needs special eye ointment every hour. One tube of this ointment lasts 2 days and costs $15. Providing him the extra therapy I want to give him is at least $300 a week, but right now I can’t cover that much. I have him on nutritional and herbal supplements to support brain, immune, liver and digestive function, which cost $500 a month. And my focus right now on top of these costs, is to get him into adaptive communication programs, and get him special tools that help him communicate. There are lasers he can point with his head, buttons that say certain things he can press with his hands and by turning his head, and tablet apps with special interactive programs. I can’t keep up and I desperately need your help! These are ongoing costs, so please donate whatever you can, and I will forever be so grateful! THANK YOU and GOD BLESS!!!
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