I am the proud mother of Ivan, age 13, who has Dandy Walker syndrome and Cerebral Palsy. He uses a feeding tube, oxygen, BiPap, an eye gaze device to speak, a wheelchair, and requires total assistance. He has multiple orthopedic issues including spinal fusion, previous cardiac surgery, kidney issues, and a host of other issues.
As you can imagine, Ivan requires many specialists and doctor visits. Through the years we have been blessed with wonderful doctors to care for him. However, in 2017, during an illness requiring hospitalization, Ivan was referred and introduced to a relatively new group of doctors called Complex Care at our local children’s hospital, and his life was changed for the better.
Our Experience with Complex Care
I never realized just how much was missing from Ivan’s life until this special group came into it. This is a group of doctors who focus on children like Ivan who have complex needs. This group has become his advocate, his voice in helping coordinate with other specialists, his cheerleader and mine. They have been the most positive and uplifting group of people through every illness or struggle we have. They are there for Ivan when his regular doctor or other specialists don’t have answers. They research and come up with ideas that others would never think of trying.
In the life of a special needs mom, sometimes you dread adding another doctor or specialist to the already long list because you make so many trips as it is. But I am so incredibly thankful that Ivan was referred to Complex Care and for the care they have given him.
It is the entire group at Complex Care who makes a difference. It is the combination of the doctors, nurse practitioners, nurses, pharmacists, dietitians and every person who plays a part. They work together as a team to see Ivan and find the best way to help him.
Ivan’s Life After Complex Care
Life is not easy with a child who has complex needs — there are many challenges — but every day as a special needs mother is a blessing. Ivan brings our family so much joy. He smiles every day and radiates the most pure love and joy to everyone who knows him. In spite of his complex needs, he is full of personality and it shines through, whether we watch the nonverbal clues such as smiles, or he uses his eye gaze to tell us jokes. Every day and each moment is a blessing. I am so thankful for the help of all of Ivan’s teams of doctors such as Complex Care and all others who make a difference every day for him and others like him.
If you are a parent of a child who is medically complex, I would definitely recommend you looking into a complex care program in your area. Unfortunately, not every hospital has one, but more are being added every year. The understanding and expertise this group gives families can be life changing. I am so incredibly thankful for everything they do.