Get Well George 2019

This campaign is a continuation of a campaign started by our friend Joneane in September. Our 16 year old son George was catastrophically injured on the school bus on the way home from Ventura High. George's seat belt was not secured and a shortstop caused him to catapult out of his wheelchair, hit a safety bar behind the driver and land on his back, breaking both of his legs. His two fractured femurs led to fat embolism syndrome which nearly killed him. We are still on the road to recovery and have been working closely with the staff at Totally Kids several times a week where George is a full-time resident. It is about 60 miles from our home in Ventura and quite a financial burden. It is so important as his parents, we are his advocates and a part of his therapy as there is nothing as effective in motivating him as the love and encouragement of his Dad. This campaign will help us make ends meet as I have been on disability due to my ongoing struggle with multiple sclerosis. John is both George's primary caretaker and our family's sole breadwinner. Here's the whole story: George has Duchenne muscular dystrophy and has been in a wheelchair since the age of 9. George hasn’t let this muscle disease stop him from loving life and living a quite typical teenage existence. Duchenne muscular dystrophy is a neuromuscular disease very similar to ALS or Lou Gehrig's disease. The exception is Duchene almost exclusively affects young boys, robbing them of many of the things that we take for granted, beginning with their ability to walk, eventually affecting the heart, the most important muscle we have. But despite being well aware of his weakening body, George is a kind and compassionate kid who loved history, gaming, his dogs and pickles. I am so proud to be a stepmom did such an amazing young man with such a loving spirit! George has lived with his father John along with little sister Emily at our home on the westside of Ventura in Southern California. Although George takes constant daily care, with his father as his main caretaker we have worked very hard to give George a beautiful life. We have been so grateful. George did not have any prior developmental disabilities that can be common in a complex condition like duchenne. Everything changed for us on Thursday September 13th at about a quarter to 4 in the afternoon. I received a call from George's cell phone but on the other end of the line was the bus driver reporting that they had an incident on the bus and George had fallen out of his wheelchair. George's wheelchair was secured to the bus however, his safety belt was not fastened. I immediately called his father who was a mile and a half up the road at our small auto repair shop that we opened in order to be close to George and able to advocate for him. I beat the ambulance to the scene and boarded the bus to find George flat on his back with his legs splayed out underneath him in a grotesque position. After the driver stopped short  george flew from his seat hitting the back panel behind the driver before falling backwards with his legs folded under and having hit the back of his head on the footrest of his chair. George was screaming at the top of his lungs in pain. By now, the fire department and ambulance had arrived but weren't sure what to do as George has severe contractures in his joints and they were scared to hurt him. Within minutes my husband John arrived and had the EMTs assist him in putting George back in his wheelchair in order to get him off of the bus. My husband drives the donated wheelchair van we have and it was decidedly the quickest way to get George to the hospital safely. Shortly after arriving at the Ventura County Medical Center ER, George's fever Spike to 103.8, his heart rate was racing at 205, his oxygen was dropping and he was obviously in trouble. We've been taking George to UCLA over the past 3 years to the Center for duchenne muscular dystrophy for regular clinics and also participation in several clinical trials. After getting word to Georgia's team there, UCLA immediately asserted they were sending a helicopter and team of flight medics. So at about 1:30 in the morning my husband John and my stepson George took the life-saving flight to Mattel Children's Hospital UCLA. It was about 4 a.m. when I received a call from my husband John who was in an absolute panic. He told me there were 20 people working on George who was suffering multiple organ failure. George had fractured both femurs causing a fat embolism, resulting and failure of lungs and showering the brain with emboli, interrupting his normal neuro function. They were trying to prepare this father for the fact that he may not survive this. I arrived with my mother at the Pediatric Intensive Care Unit by about 7 a.m. and by 10 the doctors met with us to discuss what would be our only option to say George life. They opened George's chest and connected them to ECMO which is the most cutting-edge and severe life support system on the planet. In case of failure of both lungs and subsequently the heart, this miracle machine takes the blood from the body, oxygenates it, then puts it through a pump to keep the organs alive, hoping for the lungs to recover enough and resume their job. They told us it was a 50-50 chance but again it was his only chance. George survived by being placed on ECMO and after about 3 days was able to come off and sustain life on a ventilator. After a day they closed his chest up. He had survived and we were so grateful but still terrified and still unaware of the extent of damage that was suffered to his heart and his brain. George was in a complete for over two weeks while John and I stayed at the nearby Tiverton house which is owned by UCLA with George older sister Helena who immediately flew out from Kentucky as soon as she heard what had happened. Although it's owned by the hospital  lodging at the Tiverton still comes at $130 per night, and is still the best deal in a very expensive town such as Westwood. Unfortunately it's a very busy place as there are people coming from all over the world for Cancer Treatments at the UCLA Medical Center. We were so blessed to have such support from our duchenne community and our amazing angels at Team Joseph as well as the generosity of our friends, family, even strangers through our GoFundMe page which allowed us to stay within walking distance of the hospital where we were at least four or five times a day getting constant updates, learning about everything that was going on and giving consent as George was far from out of the woods. So we rented Airbnb apartments so that we could get some rest, some privacy and a kitchen where we could prepare meals. It was a few weeks before George open his eyes but it was obvious he had very low brain function. This resulted in the necessity of a tracheostomy, keeping his Airway clear so he could be extubated. His brain was not doing the involuntary function of keeping the airway clear. George also began biting down on his tongue so severely that the dental team had to fit him with a bite block to protect his mouth from further damage. By then the cardiologists had discovered a PFO for patent foramen ovale which is a very common small opening in the heart which allowed the fat emboli to travel quickly and en masse to the brain. The doctors decided to perform a closure to eliminate further damage to the brain. At the same time, George also had a gastro tube surgery which would allow him nutrition to the belly as opposed to through his IV which is not ideal and not sustainable. It was a very long day and many hours of surgery but George came through beautifully. So George spent 7 weeks in the picu at UCLA with a trach tube a G-tube and full casts on both legs. Hooked up to a ventilator and receiving breathing treatments and painful repositioning all day and all night. The staff at what is Mattel Children's Hospital within UCLA was absolutely stellar. We worked alongside the doctors, nurses and therapists, learning everything we needed to know about George's condition and how we would someday move ahead. We learn to do his trach care, suctioning secretions and even changing out the trach tube. We were getting trained to take our son home. Yes, we were scared to death but up to the task. George was discharged from UCLA and he was given 16 hours per day of Nursing Care. This would mean that we, as his parents, would be doing the Lion's Share of his rehab. All studies show that if the parents are willing and able to put out the effort, patients recover much faster in their home then they do in the hospital given the appropriate nursing help. So we brought George home to his room which, with the help of some very true blue friends, we turned into a clean, organized and beautiful room for healing. We had a terrible time getting the nursing care as we were repeatedly told about the shortage of LVN's. We did our best for two weeks having no more than 8 hours per day of skilled nursing care. Despite that, we were providing George everything that he needed but he started going downhill. He was having a terrible reaction to the G tube feedings, arcade you hadn't made a sound for almost 8 weeks was screaming past his trach in pain. Things were quickly spiraling out of control and on our third trip back to the PICU here in Ventura, we were told that George was experiencing thalmic brainstorms which is apparently very common after 74 days following a traumatic brain injury. So George spent another couple of weeks at the Ventura County Medical Center and thankfully became once again medically stable and on the road to recovery. Dr. Mazel, one of the critical care physicians there suggested we try to get George into Totally Kids, a children's Rehabilitation Hospital in Sun Valley which is about 60 miles from our home. This little Hospital has 45 beds and a staff buy some of the brightest minds of UCLA. In fact George discharge attending physician is the medical director there. They were George's best chance at the most complete Rehabilitation as they specialize in kids with ventilators, tracheostomies, feeding tubes and traumatic brain injury. We've been told that in TBI time is of the essence and there is a window of opportunity for improvement so there was no time to waste. We were able to get George the available bed and hat he is now living there with intensive focus on his Rehabilitation. George is getting up and into his chair daily and getting lots of the attention he needs from respiratory, speech, physical and occupational therapists. George is responsive and is communicating with facial expressions but it is still very difficult to understand his wants and needs. But we are making progress and we are so very grateful. George will need to learn to speak again as well as learn to swallow without aspirating. We have the hope that someday he will be weaned off of the ventilator and eventually able to have his trach removed. He would then be able to speak and someday enjoy food again. We travel to Totally Kids about four or five times a week as it is so important that we are plugged in engaging and advocating for him everyday. George is progressing and enjoying watching Netflix. Although he cannot speak to us yet, we can tell his sense of humor is intact as he smiles and laughs at all the appropriate jokes. He's effectively showing us his emotions, he's scared, he is lonely and he's angry too. Our George's in there and we are standing by him on what is still a long road with the hopes he may be able to return to his beautiful life before this accident. Please do what you can to help see us through by donating and/or sharing our story.