The Challenges, Triumphs, Frustrations, and Joys of Collaborating with Health Care Providers
by Greg Hull
Hello, my name is Greg Hull. My wife Kathy and I have five children - Rebekah, Elisabeth, Sam, Eddie and Naunica. Over the years several other children have spent short stays with us. The five that are with us today are here to stay. Rebekah and Elisabeth are typically developing fifteen year old twin girls, adopted from Korea when they were six months old. Typically developing includes hormones, learning to drive, horrific mood swings, loud music and love hate relationships with siblings and parents.
Sam is African American. We went to Whidbey Island Naval Air Station to meet Sam and brought him home from the Navy Hospital when he was six days old. We did not know Sam was born with neonatal herpes. For the first time we went to the Emergency Department at Children’s Hospital. We have lost track of how many times we have been there in the last decade. We also met the Infectious Disease Department at Children’s. Sam developed normally until he was seven months old. Then the herpes virus reentered his brain. The words Herpes Encephalitis were added to our vocabulary, and we met the Neurodevelopment Department. Suddenly we became members of a very exclusive club, Parents of Children Living at Children’s. After spending ten weeks at Children’s, waiting for Sam to die, we went home with Sam to live. Twelve years later, Sam is still very much with us. Developmentally, he functions on a three to six month level. His wheels are on a chair instead of a bike. From Sam we have learned many lessons. Because of Sam, we met Eddie.
Eddie is our mocha man, African American and Caucasian. We met “Fast Eddie” at Children’s when he was eighteen months old (he could code very fast). He was a 24-week preemie, who had never left the hospital setting. His world was a crib, a vent and his best friend Lefty (his left hand). We met the Pulmonary Department at Children’s. We learned how to protect Eddie’s airway. Over the next two years, Eddie learned how to breathe without a ventilator. “Autistic-Like”, “Unattached” and “Behavior Disorders” were added to our vocabulary and we met the Child Psychiatry Department at Children’s. And we thought seizures were difficult to manage. Because of Eddie, we met Naunica.
Naunica was six months old and recovering from heart surgery. She was ready to be discharged from Children’s. Our role was to take care of her while she recuperated from her surgery and teach her birth family to use her NG feeding tube. Naunica has only one functioning kidney, and because of that she had a very bad reflux. Because of Naunica we met the Cardiology, Nephrology, Urology and Endocrine Departments. She has brought the joy of typical development back into our home. She is now a two year old African American child being parented by two fifty-year old Caucasians and two fifteen-year old Koreans. We hope to be teaching her to drive when we are sixty-four.
Apparently all this experience counts for something. Somehow through the last sixteen years of parenting, we have stayed married and kept the same job for over twenty years, remained healthy and mentally alert (if you don’t ask our daughters). Ours is a happy home, decorated in early childhood and chaos. Nobody can leave without finding a replacement. The girls are praying they get accepted to a college out of town.
We have been asked to share our challenges, solutions, triumphs, frustrations and joys of collaborating with professionals. The miracle is in the fact that we are still doing it, and the reason is that it is the only way we can keep our kids with us. We were blessed with walking out of the doors of Children’s and into our community where we found a “Medical Home” before we even knew we needed one. And we live in a county that supported us in finding the resources we needed to keep our kids at home. We are here today because we live in Snohomish County and our Medical Home is with Jack Stephens and the staff at the Everett Clinic. We also have a return ticket to Children’s that we can use day or night whenever our kids’ needs can’t be met in our community.
We have had many challenges over the years and a continuous education in dealing with these challenges. Some of these challenges have been simple and some seem to go on forever. Something as simple as feeding a child has been at times a nightmare in our home. Finding the balance of getting enough nutrition and seizure medications into a tube-fed child and still having him be alert, responsive and not throwing up. The patience and trust it takes to finally get a few cc’s of formula into the mouth of an orally defensive child. The frustration of waking up to a feeding pump that has fed a bed all night instead of your child.
Oral care for one of our kids required general anesthesia to do a day surgery for teeth cleaning and a tooth removal. How do you explain to someone with typically developing kids what it is like to need four adults to deal with one of your kids? And you feel so sad when you can’t explain your behavior to your child who trusts you.
It takes patience, humor, forgiveness and living with less sleep than you believe humanly possible. Our kids are all sundown kids. The sun goes down, the kids get sick. We get crabby from lack of sleep and fear. If we’re not careful, this anger and fear spills over into our relationship with the professionals that see our children. Just like marriages take work, so does the relationship between parents and professionals. Keeping our children as healthy and happy as they can be requires professionals we can trust and a relationship based on mutual respect. Sometimes those relationships get very tested. We ask ourselves - is it us or them? We have learned, sometimes, to step back. Sometimes, some things just need time.
We could go on and on about the equipment needs of our children that remain unmet. Don’t get my wife started on the childcare situation of children with special health care needs or the need for respite. We want to leave all of you with the best piece of advice we have to give. Take time for yourself. For me that means my motorcycle. Make time for my wife; for her that means a movie and dinner at least once a month, alone, without the kids. Make time for your kids without special needs; for our teens that means time away, alone with us. Knowing that what we are doing as a family is a choice and that every six months we sit down and ask them if we keep on or change course. And for our kids with special needs it means finding the best professionals we can - people we trust and can work with in crisis. It also means getting a van with a lift and wheel chair tie downs for two, so that we could all be together in one vehicle. Another challenge solved, this one with time payments. In closing, the initials after my name are G, A, D, S, S, S, E, V, W, D.
· G is for Glue Man for urine bags
· A is for Arm Holder for blood draws
· D is for Diaper Changer
· S is for Suppository Installer, Suction Mechanic, and Strength for a Sixty Pounder
· E is for Emesis Catcher
· V is for Ventilator Fixer
· W is for Wheelchair Operator
· D is for Daddy
