I am in healthcare, but I have to admit that when it came to cardiac defects and down syndrome I was clueless. I had to quickly educate myself. I was actually a little embarrased by how much I didn't know. We have been so blessed in the fact that Samuel has excellent doctors...with one exception....his neurologist, but fortunately we don't have to see her very often because he's being weaned off of his phenabarbatol...and I'm sure that she is very good at what she does it's just that she shouldn't be around people...at all..she has the personality of a leaf. She told us that we should be glad because at least Sam has a "good" downs personality. After that I booked his appts with the nurse practitioner and I made sure to tell her why and I asked her from here on at to refer to Samuel by his name and not his diagnosis.
I think that alot of parents are intimidated or aftraid to ask questions. I know for me, even being in healthcare, I didn't want to ask questions at first because I didn't want to appear stupid, but I quickly got over that. The more procedures that Sam had and the more doctors or residents I spoke with the more questions I asked and began to write them down so I wouldn't forget. Both times Sam has been in the hospital we have seen multiple doctors and every one of them would tell us something different and that becomes very frustrating... I believe the breaking point for me was when Samuel was in the hospital for the first time as a newborn in the CICU and I had gone home late that night and returned early in the morning to find out that they had done a procedure without my knowledge. Needless to say that I had a hormonal induced break down right in the CICU. I let them know that was unacceptable and not to be done again. I AM HIS MOMMY!!!! No matter what my husband and I are his biggest advocates...and just because someone has and MD after their name doesn't mean they have all the answers...God placed within all mothers that little sensor. Every mother knows what I'm talking about. That alarm that goes off when something is not right. I know my child. I know what his different cries mean... I know when he doesn't feel good. I know when he's had enough and not even the best doctor in the world will know my child better than me!!!! Always remember that and never be afraid to ask questions. You will be your child's biggest advocate
You got that right sista!
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