Once again I'm totally frustrated with our Cardiology clinic in Little Rock. They have drug their feet too long in my opinion. So, I feel that it is time to leave that behind and move the girls local Cardiologist to St. Louis. After all, they are ranked #6 in the nation and so far we have had wonderful experiences with that hospital.
Baylee will remain seeing Dr. Mullen in Boston for her Pulmonary Hypertension and use the clinic in St. Louis for non-emergent things.... like Echo's, EKG's and sleep studies.
Blair will have a new Dr. to treat her Dextrocardia. Which, as of right now, doesn't affect her. Her heart works normal. It's just on the wrong side of her chest.
I have taken it upon myself to call St. Louis to start the process of a 2nd sleep study. Little Rock can't seem to call me back about one... so forget it. They have had over a month to get one scheduled and I have still heard nothing.
The only person we will continue to see in Little Rock is Dr. Lyle. He is Blair's Neonatologist and an AMAZING Dr. He truly cares about his patients and FOLLOWS-UP with the parents. Something that is near and dear to me.
You know... I rarely vent about these type of things.... I just go with the flow and stay strong to get things done for my kids. Yes, I have switched surgeons (which saved my daughter's life) and we found the best of the best in Boston for Baylee's Pulmonary Hypertension. I guess I'm just not taking someone's crap anymore. This is MY CHILD and I will do whatever it takes to get them the BEST care. If someone doesn't act like they care then they obviously have too much to do or just don't care. I shouldn't have to wait around FOR OVER A MONTH for someone to call me back to get something like a sleep study scheduled. Especially when they are wanting that sleep study to happen BEFORE possible tonsil removal and BEFORE Baylee's Heart Cath in November.
I'm tired... worn out... and frustrated with all of this! Hopefully this will be the end of having "bad" Dr's!
Tiff
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5 comments:
You are amazing! We have to be the best advocates for our children since they can't do it for themselves - and you are doing great!
You know, I really hope so for your family's sake. As if you don't have enough on your plate. It most certainly should not take more than a month for them to call you about scheduling something like that. I can totally understand your frustration and I'm just glad you were able to get the ball rolling in another direction. You're doing a wonderful job with those kids and with handling all the doctors and hospitals and appointments. I know that it's got to be tough, tougher than I can really imagine, but hang in there.
You gotta do what you gotta do and sometimes that means taking your business elsewhere!
I know exactly how you feel. We've had to move on from doctors and other care providers before. It really is exhausting, frustrating and sometimes mind-boggling.
I just want you to know you are not alone, and that just because YOU are not a doctor does not mean YOU are not absolutely correct about your child.
I took Foster to a neurologist (a very old-school, VERY reputable doc) when Foster was still undiagnosed at 3, and the doctor had the gall to tell me that there was nothing wrong with my son (besides low muscle tone) that wasn't a direct result of my bad parenting. I even wasted several days believing that jerk. And that was when I learned to say - "no more." I don't know the REAL "why" of why my boys have neurological issues, but (on most days) I DO know that it's certainly not my fault. I would never have chosen for my children to have these issues, and I have moved heaven and earth to help them. How would that ever make it MY fault?
Gushing in your comments here, to basically say - good for you.
love.
thanks for stopping by and commenting on my blog. i'm new to your story, but i'm giving you a virtual high-five for standing up for your daughter(s). our docs told us from day one i am ryan's advocate and should question them every step of the way. if you are not getting good care, move on, girl!! good luck and good going!!
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