As far as struggles go, some are more obvious than others. Today we ran into a situation that,if you have a family member with a disability, can be very frustrating.
Not everyone lives in or close to a city. And with a child with Duchenne Muscular Dystrophy you can be sure there will be a lot of healthcare professionals involved with your family. In our case we tend to go to the Big City every 2-3 months.
Our Neurology team is very good at coordinating their part to cut down on trips. However there are so many other professionals such as pediatrician,bone scan, cardiology, and more. Not to mention the trips to get orthotics and physio.. these all on top of regular physical health visits.
The most recent frustration we experienced was with the pediatrician were to to see. Our child recieved a sleep test 2 years ago. They had called and asked us to come back in for results. Exhausted with running back and fourth I requested the results over the phone. They refused. I called the sleep lab and the results were given to me as he was fine..no concern. 1 year later a letter was sent for another sleep test more in depth. We went in and they called back to get us to come in for results again. Due to bad weather that appointment had to be cancelled. I again asked for the results via phone or telehealth. They refused.
Recently they called again to book the appointment. At this point I requested again for a phone call or teleconference to avoid another trip to the city(3 hours of driving one way) They refused saying they did not have the technology. At this point I decided that if they still need us to come in it must be more serious so I agreed.
My husband had to close his business for the day. My son had to take the day off school. I was too sick to help. Gas,food and snowy weather to contend with but they got there. My hisband just called and said the appointment was 7 minutes long. They told him all was well and there was no concerns.
For those of you who have walked in these shoes this story will be all to familiar to you. I recently read an article where the author felt like a "file Number" instead of a person recieving care. This can only change if more people tell their stories. It's not easy trying to keep up with everything we need to do to keep our loved ones healthy as possible. If communication between professionals and families could help solve this then why isn't it happening.
For me....I am glad my son is ok....but I am completely frustrated at the taxing situation we ge put into for the thoughtless actions of others.
