Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, June 07, 2016

Doctors, please listen to the parents!

Remember Angela's whole liver craziness? Remember the first time we found her in a coma, she rode by ambulance to the hospital, and I got raised eye brows over the mysterious coma?

Remember when we found her in a coma the second time? Then the questions started about who could have put something in her tube. And I refused to do her cares or feeds while she was in the hospital because I went back to when Angela's gtube was placed.

Our pediatrician was recently at a conference of the American Academy of Pediatrics (AAP) in Minneapolis. One of the speakers discussed "Listen to the Parents", and this slide appeared on the screen.

Our pediatrician was excited. "Hey! That's my patient!" 

On the far right side, under "discussion", can you read the last sentence? It says, "...leading to the unexpected diagnosis and proving that her parents were right all along." I won't lie. It feels good to be validated. 

Apparently Angela's story is making the rounds. I hope that physicians are learning something from it. I know I have learned to trust my instincts even more. 


Unknown said...

I love this for you!!!

I'm also extremely grateful that the staff, while questioning and clearly concerned, did not do a "medical kidnapping" and traumatize you, Angela and everyone else. I'm thankful they hung in there and watched and tried to keep figuring it out! Hugs and so proud of you and thankful . . . oh so thankful . . .

Welcome Home Katya

eliz said...

WOW!! I can't tell you how many times we've gone through something not as big as what happened to Angela, but similar questions towards us. Even school recently accused us of not administering meds to a foster child who had been switched from 2 tablets to 1 slow release tablet of a medication. After psych approved going back to old med all was fine. But first we were accused. Right now we have a daughter with Sotos Syndrome which is quite rare. Her elbow was swollen. We took her in. A Dr at her clinic mailed her x ray to a Dr friend in TX. A week later on Sunday night 9:30 p.m. we get a call from that Dr from his home with questions. We don't know- we're just as worried as he is!!
Great post!! I'm so glad you were validated. (((HUGS)))

eliz said...

p.s. we just found out the Dr at our clinic never told his TX radiologist friend that our daughter had Sotos!!!! So NOW that that radiologist knows she has Sotos, they know the increased elasticity she naturally has, caused the swelling and odd looking elbow. In the meantime it went back all by itself. Sheesh!

Cindy said...

Wow!! That's amazing! Thank goodness they actually added, "The parents were right all along." Good for you for continuing to fight, your persistence is going to help many families in the future!