A SPECIAL CHILD WAS BORN
Teddy, Theodore Daniel Richter, was born with Dandy-Walker Syndrome and agenesis of the corpus collosum. He was not expected to live long enough to be born alive. He was delivered by C-section. He had two shunts placed when he was one day old to drain the excessive amount of fluid from his head. One shunt was placed in the enlarged upper ventricles of the brain and the second shunt was placed in the cyst where the cerebellum was missing.
He was very delayed. The cerebellum is commonly known as the motor center of the brain.
Developmental milestones were all delayed or nonexistent, such as lifting his head, rolling over, crawling, babbling, talking, walking, etc. We enrolled him into any and all programs that would help him. He saw therapists and specialists. One neurologist told us he most likely would never walk or talk and would live his life much like a “vegetable.”
His progress was painfully slow. We did everything the therapist and specialist told us to do but still he did not progress much at all. When he was five years old, he started to get our fresh-from-the-table “homemade formula.’ He began to flourish!
Teddy was five years old when he said his first clear and meaningful word. He took his first independent steps. It was unconventional, but nutrition was a turning point for him. Now, as we start over with his brain injury, homemade formula is again a need. The time, effort and production of the formula is a lot of work at this time. Not all his nutrition is homemade, but some is. We are working towards 100% homemade as soon as we can. He also gets some snacks to help him be orally aware of food and to keep him involved in mealtime and snack time social interactions.
As a child he continued to make amazing gains. More conventional and many unconventional therapies were used with him. He was becoming a busy, happy, interactive boy. By the time he was 18 years old he was able to walk, run, jump, bounce a ball, hike (with siblings), swim (in shallow water), ride his bike (three wheeled), jump on a trampoline, talk fluently, read at a third grade level (with very good comprehension), tell and understand jokes, sing (staying on tune), play the piano, play computer games on his tablet, chew and swallow food, and more.
MEDICAL MALPRACTICE
On November 30th, 2019, Teddy had a catastrophic brain injury. He was in a hospital in AZ. He had been flown from St George, Utah, to a bigger hospital with a higher level of care. He was admitted into a neuro-intensive care under the care of a neurosurgeon and medical staff when his ICP (intercranial Pressure) caused swelling and oxygen deprivation to his brain. He had cried with severe head pain for two days and on the third day he stopped breathing.
The doctors and medical professionals had let him down. A simple adjustment could have prevented the problems. The medical malpractice was obvious and devastating. Teddy was severely injured. His brain could not work as it should. He no longer could breathe, swallow, cough, move himself, smile, frown, talk, laugh, …. He became like an infant in the “blink of an eye.” For five long months and in three different facilities, he fought for his life.
We, his mother and sister, stayed in Phoenix the whole time at the Ronald McDonald House because our home is over seven hours away. He finally was well enough to go home and be cared for by home visiting nurses and family (mainly his mother).
TEDDY ENVIRONMENT TODAY
Teddy is now cared for at home in a loving environment. His apartment in our home is like a small medical facility. His bodily functions are that of a baby, yet his mind is trapped inside. He is there! He is aware of his world and tries to show it by smiling when enjoying something and crying when sad or in pain. Although his body functions like a handicapped infant, he is a man. He is 5’8” tall and weighs 160 lbs. He has very minimal functional movement. He requires 24-hour care since he cannot cough, swallow or breath on his own. Even a few minutes makes the difference between breathing or suffocation – life or death.
His rooms are filled with all types of necessary adaptive and life-preserving equipment. He has a ventilator for breathing, a pulse oximeter (to monitor oxygen levels and heart rate), an oxygen concentrator (chugging away to keep his oxygen levels up), a percussor (to loosen mucus/secretions in the lungs), a cough machine (to force him to cough up the secretions), a suction machine ( to remove the mucus and secretions), a humidifier (to keep the airway moist), a feeding pump (to feed him since he cannot eat on his own), a hospital bed, a shower chair, a Hoyer lift, and a custom wheelchair (specialized to accommodate his breathing and eating equipment). This list can go on with other equipment like a nebulizer, percussion vest, chi machine, etc., but one can see the amount of specialized equipment needed for him to function.
His room is decorated with encouraging pictures of his life “before and after” and practical information regarding his current needs. Above his bed is a sign telling all about his trach size and type. On another wall is a large white board with a daily schedule of medications and feeding times. It also has the current medicine he is on and dosages. It has current ventilator settings and g-tube size. There is a record of trach change, g-tube change as well as last bowel movement. Next to his bed is an extra tank of oxygen with an Ambu bag in case he needs resuscitation and a trach bag (it goes everywhere he goes) containing life preserving equipment and tools in case his trach is blocked or dislodged. The cabinets and dressers are filled with daily supplies such as trach and vent supplies, feeding supplies, diapering supplies, sanitation supplies, bedding, towels and cloths, cleaning products, and more. He goes through a lot of supplies every month. It is mind boggling.
TEDDY CARE
Teddy goes to many appointments. Since we live in a rural area, the distance is never less than an hour away. Preparing him to travel takes around an hour. A day trip usually involves three caregivers to help him. We are gone approximately four to five hours or more. Longer trips involve lodging and much longer travel time to the destination. On long trips we get two rooms with a door connecting them. The one room is for Teddy and all his equipment and supplies needed. The other room is for the driver and day time caregiver to get rested to ensure a safe and healthy environment for Teddy as he travels. It is impossible to get rested in the same room as Teddy with all his machines humming, buzzing, beeping, chirping, and chugging away. The night caregiver must perform suctioning, coughing, repositioning and changing Teddy’s brief several times throughout the night as well as giving him medications at the scheduled times.
The night is always full and busy. Teddy may be accustomed to the noise, but the rest of us are not. We require quiet restful nights to be functional and safe throughout the day.
Teddy needs lots of therapy to regain function and control of his body. He needs Speech Therapy with AAC (Alternative Augmentative Communication). He needs Physical Therapy to build and maintain flexibility and strength of his body. He needs Occupational Therapy to regain
function, purpose and independence. Teddy cannot adjust himself enough to avoid bed sores, so we, as caregivers must reposition him. He is unable to toilet himself, so again, we change his brief several times a day, always monitoring his output so he avoids constipation, sores, and
infections.
When we are able to get Teddy out of his bed and into his wheelchair, he gets along better. His oxygen levels increase, his bowels work better, he has increased muscle strength, and he tries to follow requests to move his arms and legs. He is more interactive with his surroundings and the
people around him.
Yet, it is a big project to get him prepared and into his chair. The suction machine and the feeding pump are unplugged and put in travel bags, so they can hang on the back of the wheelchair. A full oxygen tank is strapped onto the wheelchair. He is switched to a special HME (heat moisture exchange) filter and removed from the humidifier for his lungs. His brief is changed so he is dry and clean. Then he is re-dressed into clothing he wears while in his chair. Those clothes give more protection, modesty and do not fall off as easily as his bed clothes do. He also looks more “normal” with these clothes.
Now he is ready to be placed in his wheelchair. It takes three people to safely transfer him to his chair. Remember, he is 5’8” and 160 lbs. Two people coordinate a modified “fireman lift” and transfer him from his bed to the wheelchair. The third person quickly moves his breathing
machines to the tray on the back of the chair, connects the oxygen and attaches the ventilator to his trach. They also suction the “rivers” of secretions coming from his nose and mouth. Everything is strapped down and buckled, including him.
Teddy has a customized van specially made for his needs. It is a Mercedes Sprinter diesel engine that gets about five to eight miles per gallon. The van has a wheelchair lift, electrical outlets to charge his equipment, vinyl flooring, wheelchair mounts, portable drawer stack on wheels, night lights, cabin lights, loading lights, refrigerator and sink, bed (in the back) and caregiver chairs just to name a few things that make the van a safe functional place for Teddy to ride. The ride is quite smooth and he is able to see out without being bumped around excessively. Even the windows are treated to keep the temperature better inside the van. The van has given Teddy and his family the opportunity to take him to his appointments avoiding costly medical transport that requires an ambulance with a paramedic, EMT and driver as well as Teddys caregiver. Medical transport is charged at approximately $3000.00 one way (to St George, UT, which is only about 50 miles away). To go and return home could cost as much as $6000.00 in
one day. Teddy has around eight to ten appointments a month. Some of those appointments are in Flagstaff, AZ, and Phoenix, AZ. Personal transportation has been cost effective for everyone even if it requires three caregivers. If he were to go to Phoenix using medical transport the cost would be so much more.
When Teddy is buckled up and ready to roll, we push him out to see the lawn and gardens organized and grown for his enjoyment, or he goes in his mobility van to a medical appointment. Just going outside to visit his family in the other part of our home is fun for him. Shortly after Teddy came home from his “five month” stay in hospitals following the brain injury, we applied to a state program to have a wheelchair lift installed in our home so Teddy could be with the family during meals and family events. When the home evaluation was conducted the lift was denied because they considered Teddy’s rooms a separate apartment. It is like a separate apartment since he must go outside into the weather to go into the other part of the house to be with his family. Since the state evaluation said he has his own apartment, then surely it must be.
A question was raised about how any entertainment costs benefit Teddy. First of all, is there a standardized assessment for a nonverbal, quadriplegic, ventilator-dependent individual that gives enjoyment/benefit quotient? Hmmm, not really. So how do we deduce the benefit? For starters we knew what he liked before his injury and try to help him enjoy the same or familiar likes. We look for subtle clues and signs that regular caregivers and family can see, such as a smile, relaxed and peaceful facial expression, normal heart rate, good oxygen saturation, good but not spastic muscle tone. Then we know if he is liking the activity. Some of the entertainment for him includes but is not limited to going for a drive, visiting a friend, walking/rolling around the yard, seeing the gardens and lawns, watching/participating in family BBQ’s, watching others dance, sing or play an instrument, and enjoying pretty lights. For Teddy’s birthday he had a party and invited friends and relatives to visit. He showed a lot of enjoyment in his face and body.
Teddy’s health is more fragile than it was before the brain injury. Yes, he has Dandy-Walker syndrome and agenesis of the corpus collosum, but he was fully functional and required some supervision but not 24 hour care to stay alive. Now even the slightest change in his supplements (all his supplements are approved by his primary physician) and medication can make him sick. An example of this is that his blood pressure has been very high since the brain injury, but with omega-3 oils and herbs for blood pressure reduction he does not need blood pressure medication like he did.
Teddy has list of prescription drugs as well as OTC medications which insurance does not pay for. Without the OTC medications he could get very ill like he did two years ago. He got a sinus infection that turned into an ear infection that turned into mastoiditis and developed pockets of infection inside his skull next to his brain. The infection led to two months of intermittent hospitalizations, two surgeries involving an ENT surgeon and a neuro surgeon and a lot of pain. Since we are so aware and careful about his needs, he did not even visit the ER for two years, and when he did have an ER visit the family and caregivers were educated on the new needs and what to do to keep him away from the hospital as much as possible.
In December of 2019, we realized Teddy was not going to get better from the horrible mistakes made in the hospital by incompetent medical staff, and we found a lawyer. Teddy’s life has always been involved with medical people, but this experience was like no other he had experienced. The process of the lawsuit was very lengthy. It took four years to complete. We, the family, put time, energy, sweat and tears into helping Teddy have the means to live his life in a somewhat meaningful way. He has been in the Arizona’s Developmental Disabilities Division DDD since he was an infant. DDD was good for him, but after the brain injury, the state fell short of covering his specialized needs. They do help but seem to be disconnected from the reality or severity of his needs. Therapies are too infrequent or denied when he needs them even more. Physical Therapy was denied after he turned 21 years old, not because he didn’t need it but because he was now too old! Some supplies that seemed necessary were not approved for him, such as disposable bed pads, gloves, and wet wipes for brief changing. The government programs seem to be a “one size” should fit all. The settlement from the lawsuit was enough to fill in the gaps and make his life healthier and happier. However, it does not seem to be enough to cover all his needs.
As his mother and legal guardian, I want only what is best for Teddy. I have devoted my life to caring for him. The physical and emotional weight of caring for him has been huge. He is not my only child. I have twelve other children besides him. I have given up any outside entertainment, vacation or personal time so I can take care of all the needs of Teddy. Even the fact that I have spent many days writing this shows the efforts I put into making his life the best it can be. No one knows the massive amount of paperwork, phone calls, appointments and sheer time that is spent keeping Teddy alive and well, except another parent/loving caregiver who has been through this. Life is very stressful and yet just seeing him make progress such as:
- Blinking his eyes to say “yes,”
- Moving his eyes back-and-forth to say “no,”
- Having enough muscle tone to hold his head up,
- Having trunk control to sit independently for a few seconds
- And being able to use his eyes to follow someone is worth the effort to keep going.
He is locked inside and is working hard to let us know he is there!
Anything we can do to encourage Teddy to find enjoyment in his life, we will do. He has brought so much love to our lives. We will never be able to repay him.