Taking a child to the hospital can be a little nerve wracking. Taking a special needs child with medical complications during life with COVID to the hospital…well, the frustration level is a wee bit higher. Our hands are tied this time as we wait for medical care to catch to the massive delays caused by restrictions put in place last year. I know it should all work out, but I’m going to reread this old story again before I take Ronan to his next procedure, which is scheduled next month.
I’ll need the motivation.
That time, from start to finish, everything turned out well. This time, it’s a new team of providers working with us. They know where I stand on certain medical topics. They know that I trust them and respect them. Most importantly, they know that beyond a shadow of a doubt, that yes, I do know my son best.
Ronan has a procedure coming up this week. He has another one scheduled in two weeks, too. I'm getting lots of phone calls about those appointments as they get closer. The nurse, the doctor, another doctor, a patient advocate, and now another nurse - quite a few people, including me, are checking and double checking on things. That involves making sure that all of the paperwork is done, that all of the information is current, and that all of us are on the same page.
I've experienced being on the same page with other providers. It's a good feeling and actually quite comforting to know that someone else understands just how complicated Ronan's case is. I'm grateful that they quickly include me in discussions and in pre-op work ups. In the past, providers have told me that they appreciate what I have to offer. They want to hear my thoughts, and they make sure to include me and update me as much as possible. That makes appointments run smoother, and it makes treatment plans more successful.
Not all of our experiences with medical providers have been smooth and successful though. I've stayed polite while listening to a doctor belittle me. While waiting for him to be done with a rant, I collected my thoughts as well as my things knowing that that appointment would be the last one. Another time, after learning that a provider was less than qualified to treat Ronan, I confidently yet sternly told that person they were never to touch my child again. Their negative attitude, as well as their inexperience, were no match for Ronan.
Those encounters are never ever easy, but they have happened.
Yesterday, in preparation for one of Ronan's procedures, I got another phone call. It was from a nurse. She called to get some medical history and to tell me what to expect when Ronan goes under this week.
Once we said hello, the nurse began asking questions right away. Then she went over important information: confirmation of the procedure date and time, directions to the facility, and a list of the paperwork that I needed to bring. After she gave me a list of things to bring and what to expect, it was my turn to talk.
Nurse: Do you have any questions?
Me: I do. You answered a few of them already with the information you just
shared, so thank you. I appreciate how thorough you were.
Nurse: Thank you.
Me: One of Ronan's other doctors ordered some labs. Can we bring the lab slip with
us when Ronan goes under?
Nurse: Smart idea.
Me: Thanks. We try to do those when Ronan is under. He gets so nervous for
blood draws. If we can do the labs during the procedure, that'll be amazing.
Nurse: Yes, we can do that. Whatever we can do to help.
Me: Thanks, it's hard sometimes, but with help from the right people, together,
we can get a lot done for Ronan.
Nurse: We know it can be hard for some kids...and their parents. But
you know him best. If blood draws are hard while he's awake, let's plan
on the blood draw as soon as he's asleep.
Me: Ronan has sensory issues, he's non-verbal, and will be very nervous. Medical facilities
make him nervous. Can I bring his favorite blankie and his iPad for when he wakes
up from the procedure?
Nurse: Of course! You know him best, so bring whatever he needs to feel comfortable...
You know him best.
It was a quick conversation, but the nurse said that to me twice in that short conversation. I was elated.
When I find myself talking to some medical providers, I sometimes never know what I'll say. I know what I want to tell them, but I tend to wait to say anything. I wait to hear their thoughts, their statements, and their requests. I listen quietly. I listen intently. I take notes. I feel them out. If I'm face-to-face, I watch their facial expressions. I watch their body language, I catch their tone, and I size them up.
En garde! On my feet, ready to fight. That's not how I want to feel when talking about Ronan's medical needs, but sometimes, being ready to fight is the only way things have gotten done. I wish it didn't have to be that way. But since we've been ignored and belittled by some of Ronan's past providers, being ready to battle is an automatic response.
Thankfully I didn't have to put my dukes up during yesterday's phone call. That call was a reminder that good people are out there. They're ready help Ronan. They're happy to hear what I have to offer. They understand that Ronan's Mom is just as part of the team as they are. They agree that they, too, want the best for Ronan. They promise that they will do whatever they can for him no matter what.
The two upcoming procedures are making me nervous, but I'm finding that if I have any questions, a helpful person has recently been just a phone call away. To those people who are helping, I see you. I hear you. I appreciate you. I thank you.
Cathy Jameson is a Contributing Editor for Age of Autism.