Frustrated but on the mend…

I kinda have this weird mindset with the medical profession right now and it’s not a positive one. I don’t want to have this mindset. For one, it’s such an important group of people. Honestly, what would we do without them? Second, if it weren’t for the amazing knowledge and expertise, I wouldn’t be alive today. So, please, to all of my readers who are in the medical profession, I really do have the utmost respect for you. But, I am running into a lot of obstacles that are leading me to be very frustrated when it comes to doctors for Courtney.

At first sight, Courtney is your typical 5 year old. Which means when a doctor who doesn’t know her first comes in to the room they start talking to her like she is a typical 5 year old. Completely expected so I always let this exchange (or lack of) happen. I fully expect when it’s our first time with a practice to have to give the full explanation of Courtney. But after a first appointment in a group I guess I kinda expect it would be easily found in her chart that she does have autism, she is non verbal and she is severely effected by this. Am I way off on this? And if I am, so be it, now I know and I will be ready to give a “Courtney explanation” the first couple times we meet with a doctor. So here’s a question. What can parents like me do to help the medical profession be better equipped to work with kiddos like Courtney (and to work with their crazy parents…lol).

Courtney’s ultrasound went well. No blockage or kidney stones. As much as I relieved there wasn’t a bigger problem, I was very frustrated after the appointment. First, it left us without answers. Second, I felt the urologist was not helpful. Our first appointment at this office was actually with the Physician’s Assistant who I that was AWESOME. The ultrasound was with the actual dr. He seemed unaware of her autism and the background of her issue. Did the ultrasound, saw no issues and sent us on our way with suggestions like, “encourage her to empty her bladder and to pee more often”and “have her eat more fiber rich food to help with constipation”. Oh but doctor, if only it was that easy!

I will add it was a long wait and Courtney was beyond done (and so was I) so I did not take the time to ask about some of the more helpful suggestions the PA brought up at our first appointment. Shame on me. But I’m also perplexed why I have to completely recap past visits with others in the practice. Isn’t this in the charts? Again, I don’t want to be frustrated with this profession. Help me understand why this isn’t as easy as reading the charts?

Positive note…Courtney’s last tough day was Friday. We have now had 4 great days in a row. Teachers, therapists and caregivers have reported that Courtney seems herself again. I’m hoping the last round of antibiotics finally got rid of any bacteria buildup. We are still noticing some fear when peeing but she is peeing more regularly again. I am hoping this is behind us now but I can tell you, it is not forgotten. The past 6 weeks have been hell. It will be hard to forget seeing how much pain she was in, hard to forget the bruises it left on her and hard to forget how completely helpless I felt. I am hopeful the preventative antibiotic will keep this from happening again anytime soon. I thank her (and my) amazing support team for all their love and support during this time.

One thought on “Frustrated but on the mend…

  1. I have couple of close frnds whose kids have autism..so i can understand your problem a lil bit ..though what you are going through only you will understand…you got to be strong that’s it.
    God bless you

    Liked by 1 person

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