It’s Take a Village to Care for a Child with a Chronic Condition
Guest Contributor: Jaime (Missouri)
The Importance of a Treatment Team
Being the mother of a five year old is difficult. Then you add hemophilia and an inhibitor. And if that wasn’t enough, throw in an immune deficiency condition — now you have the whole enchilada.
I don’t know how our family could survive without our entire treatment team. Each member of the team has their role and works with the rest of the clinicians to ensure the best outcome for our son.
When our son was diagnosed, we began treatment with a Hemophilia Treatment Center (HTC) shortly after we realized our pediatrician did not have the medical knowledge to deal with hemophilia, we went straight to a hematologist. He described the reality of hemophilia and what treatment looks like. They described what hemophilia is. One of our doctors offered a hematology book, often used for college students,
he thought this would give me the basic understanding in living with a chronic condition– This was huge for me as a mom. I felt more in control, I understood how the blood works and what was
happening to my little boy.
Pediatric Care in my Home
We were set up with ARJ to assist us with administering factor and identifying bleeds. This allowed us to be in our own home rather than the hospital every day. What a relief!
It’s amazing how close you become with your in-home nursing team. They see you at your worst, they hear about all your financial woes, family problems and so much more. They become a big part of your life.
Our nurses have watched our son grow and walk, learn to talk and start school. They are truly part of our family.
Our treatment team consists of pharmacists, nurses, billing specialists, doctors and of course family members. There are no less than 30 people who are partially responsible for the care of my son. These people truly have hearts of gold. They are on-call anytime and ready to answer questions or provide advice. They ensure that my son gets the best-of-the-best every day.
Without the ARJ team we would not have a healthy little boy.
They say it takes a village, for us, that’s definitely true.
Parent of an ARJ Infusion Services patient