I’m going to be honest.....
While waiting for sedation, someone came into the area we where in and said they needed to check something. They went up to my daughter, looked at her, than turned around and left. I heard them in the hallway say to someone else, “they’re blue.” .
Usually I’m greeted with much more respect when somebody is inquisitive about my daughters blue sclera. I’m asked by doctors etc if it’s ok if they can have a look at my child’s eyes. So, just have some decency and ask me instead of coming into the room to look and than go out to the hallway and talk with your colleague about my child’s eyes. I can hear you👂 I found it incredibly rude.
Now, I don’t necessarily want to speak ill of any of the ER doctors, especially in area’s they don’t have much experience in. They aren’t experts in bones, nor are they pro’s in casting. It’s not everyday that a young child comes in with a broken femur either. Spica casts aren’t very easy to put on, especially for someone that isn’t trained to do casts. BUT, I will say.... there is such a HUGE gap in quality of care that we receive in the ER as opposed to the fracture clinics care.
When my 2 year old daughter finally had to be sedated and lifted into the air to have casting material wrapped around her..... she was fully exposed below, twitching out from the drugs and the entire way/ process of how everything went down left me feeling a certain type of way. The one ER doctor that came in to help lift her that we’ve seen before, was trying to be reassuring as my daughters face was twitching from being heavily drugged. She woke a little and made a sound, but her body was still and she didn’t make any other noises. The ER doctor treating her ordered more drugs. I should of said no that she didn’t need them. I hesitated. I should of trusted my gut. When the person came back with the needle they even questioned the doctor if it was needed. It really wasn’t, but they gave her more anyways.
It took an hour or so for her to finally wake up. Everything was ok and we got to go home once she was more alert. We would see the ortho in a few days.
Two weeks we had to wait for a cast change. ER doctors always put on a plaster cast. The spica they put on, or should I say attempted to put on was literally falling apart. The piece connecting the leg and part around her waist was about to snap. The ortho tech’s at the fracture clinic are amazing !!! There where a few that all helped during the process. The one we see frequently is so amazing at her job. I felt they treated my daughter with so much dignity and respect. Covering her up when we needed the diaper off to wrap the casting around. Pulling the curtains back when another patient walked through the room for their cast removal. Talking to my daughter and asking questions etc... the entire team working at that fracture clinic made such a difficult time go easier on us. I have not one negative thing to say about them. I sent in an email to patient relations because I’m just beyond grateful for the wonderful experiences we have there.
Being a parent with kids that have OI, you have to constantly advocate for your child. When I’m at the fracture clinic and they’re getting casted, I feel like that’s the only place I don’t need to advocate for them. They know what they are doing, and clearly have more awareness in their job to do it properly while treating their patients with the respect they deserve.
Thank your ortho tech. Let them know what a phenomenal job they’re doing & that they are appreciated. If there’s one good thing that come from my girls’ fractures, it’s being under the care of them.
Wishbone Day was on May 6
International awareness for Osteogenesis Imperfecta
The community wears yellow in support. Here are the girls wearing their yellow : )
I will update again soon! Inari goes for a cast change in a few days & I think she broke a rib this evening 😔
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