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Jayden's Journey -- fighting to recover from an acquired brain injury

On Nov 30, 2016, Jayden Saylor was a normal 4-year-old when he woke up. He started coughing so his mom gave him cold medication. Within an hour, Jayden had stopped breathing. Jayden and his mom live with his grandma, who is a Paramedic. She was able to start CPR as they drove towards the hospital.  From our local hospital he was  Airlifted to a Children’s Hospital. Jayden was at Children’s Hospital for his 5th birthday and for Christmas.

After a week in the hospital, Jayden developed swelling in his brain.  He had never regained consciousness.  Jayden stayed in the hospital for close to two months.  While is is now conscious, he has been left with severe brain damage and his prognosis is fair.

Currently, Jayden is unable to function as a normal 5-year-old. He cannot understand see, walk, talk or do the things he did before. He does not understand instructions. He does not respond to many things at all.

Jayden needs constant supervision. His single mother has taken off work to care for him. He has therapy 3 days a week. He has to be in a wheelchair. He needed a special needs car seat because he cannot hold himself up like a normal 5-year-old. His family has been trying to get a lift approved by insurance because lifting and moving him is wearing the entire family down.

He cannot take a bath like a normal child, so a special bath chair is also needed for Jayden. The bathroom was not big enough for the one that Children’s tried to get insurance to pay for, so this will end up being a completely out of pocket expense. The house had to be remodeled to get equipment in. Which is another expense that insurance will not cover. Wheelchair ramps are needed to get him in the house and again, those are not covered. He needed a gait trainer, stander, gym mats, and other items for therapy at home and these were more items not covered.

Jayden needs a special bed to keep him safe, but the insurance suggested that they put a mattress on the floor even though he would roll off it and around the room. A special bed has to be purchased out of pocket for close to $10,000. An iPad was recommended to help regain his vision, but that would be another out of pocket expense. The iPad would help re-train his eyes with applications that could be added to it.

On top of equipment, gas to and from therapy for Jayden’s appointments 3 days a week adds up. It is 39 miles from Jayden’s home, so just for therapy it is 234 miles a week. Meals while at therapy during lunch and his medication time, adds up.

Jayden’s mother has applied for assistance. The applications were put in through Children’s hospital in Jan 5, 2017. She has yet to hear back from them with any assistance. While we can all understand it takes time for these programs to approve you for help, a very ill child does not have that time to wait.

Because Jayden was not born with a disability and this event was a sudden change in life style, the bills are overwhelming. There was no time to prepare for the things that a 5 year old with a major disability would need. Most people have 5 years to prepare, not just a few weeks.

On top of equipment, gas to and from therapy for Jayden’s appointments 3 days a week adds up. It is 39 miles from Jayden’s home to Drake Hospital, so just for therapy it is 234 miles a week. Meals while at therapy during lunch and his medication time, adds up.

Jayden’s mother has applied for assistance. The applications were put in through Children’s hospital in Jan 5, 2017. She has yet to hear back from them with any assistance. While we can all understand it takes time for these programs to approve you for help, a very ill child does not have that time to wait.