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Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Thursday, December 2, 2010

What can I say?

I am after all only human. Therefore, I make mistakes. Sometimes, they are really big ones. I have some doozies in my dossier. One of them, I am now ready to admit, *sigh* was switching Bean from Duke Children's to Brenner Children's. Going back to this post, which I just did, this is when I had decided that Bean and Mommy had had enough of the two hour drive to Durham. I just couldn't do it anymore. I felt that there had to be other options that were just as good. For the record, I gave hubs the opportunity to say, "I told you so" the other day. He didn't which only made me feel worse. So December '09 was her last trip to the Duke rheums and February '10 her last trip to Duke Eye. All this time I have felt okay with her care at Brenner and at Cabbarus Eye. BUT, over the last couple of months she has been having some issues (pain, fatigue, etc) that I don't feel are getting addressed, there is a HUGE breakdown in communication that is becoming ever more apparent. Also when I did this post I realized that she isn't seeing a board certified rheum and from looking at his credentials I'm not even sure if he is trained? The more and more I think and process it all through, I'm not happy with her care. CRAP. That means 1) I need to admit I was wrong and I hate doing that. 2) We need to start making that drive again. CRAP. When I mentioned it to Bean she wasn't impressed :( Just to be sure of everything and get a professional opinion I made an appointment with her regular pediatrician. Now this woman I love and trust 100%. Yesterday we went in to see her. We talked about Beans pain, fatigue and our concerns over what to do now about her specialists. She agrees that the pain and fatigue are not normal and not okay. Also not uncommon for a specialist of any kind to miss it. If it isn't on their own radar under the umbrella of what they treat and look for then they likely won't catch it. For instance, her routine labs, they're routine labs for a rheumatology patient. They won't necessarily help diagnose another possible issue. So she is running what she calls her "fatigue labs". Did you know that it isn't just the AMOUNT of red cells that count but apparently their size too? I found that very interesting. Don't ask me for anymore details. I can't retain more than one line on any given topic, sorry. So she is going to check all kinds of "other stuff" if you will. I am really hoping she finds SOMETHING. If there is nothing....then what?? Bean scared the crap out of me after her labs by the way. When we got back to the waiting room she started freaking out and crying saying she couldn't see because everything was blurry. I told her she likely got up too fast after the blood draw, not uncommon, you'll be okay. She didn't look so good so Daddy (thank goodness he came) carried her out to the truck and got her into her seat. She was ZONED OUT the whole way back to Mooresville (about 20 min). That isn't normal is it?? So anyway, we also talked to her about our concerns with Brenner Children's (not so much Cabarrus Eye) and what does she think about all of it?She said as both a Mother and a physician, NONE of it sits right with her. That being said she also HATES driving and saw where I was coming from. But, the lack of communication (I can't even get his danged nurse on the phone!), the fact that he isn't board certified and last she knew was only a general practitioner, the docs at Duke are known for their training, are board certified AND associated with CARRA, and that general Mom gut feeling has us all thinking that it's time to go back to Duke. She said it shouldn't be an issue to get her back in because she never really left. She also said if there IS any issue, be it insurance or otherwise, to tell them to just call her and she'll take care of it. The kids drove me crazy yesterday so I didn't get to call. I called first thing this morning. It took some juggling and calling back and forth from eye to rheum but we now have appointments on March 9th 2011 at Duke Children's Rheumatology and at Duke Eye. I actually never managed to get her appointments coordinated like this before (maybe once) and that was part of the problem. But, now I know it just takes calling back and forth and if it's a pain for them to change appointments around, oh well tough noogies, figure out a better system folks. So that's where we stand, we are waiting on lab results from yesterday, she goes back to Duke in 3 months, she has appointments at Cabarrus Eye and Brenner before then, not sure if I'll take her or not. I guess we'll play it by ear.
WOW, sorry this got so long winded! I hope you are all having a blessed holiday season.

Isaiah 41:10 (New International Version, ©2010)

10 So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.


Kaysi Leiterman said...

Don't beat yourself up over switching doctors-you did what you thought was in the best interest for Jenna and your family. Jenna is very lucky to have such a wonderful Mother. Sometimes I feel God chose us as the parents for our children with arthritis because HE knows we will do EVERYTHING we can to see that they get the best care and live a wonderful life. Our girls will grow up to do GREAT things!

Amy Cunningham said...

Thank you so much for your kind words Kaysi. This was a very difficult and humbling post for me. When you and I had spoken over the phone NONE of these realizations had hit me. It has been a very painstaking thought process and decision. Jenna is NOT happy with me over this and that kills me. The drive is that awful for her. But I know now that I have done the right thing. And had I not tried to switch then I would have been left wondering "what if?". Now I know. And to further clarify, we have been trying to refill her Prevacid since Wednesday. The authorization for it ran out and Dr. Sagerman's office still hasn't fixed that as of today. Thank GOD for her amazing pharmacist. He refilled it for free. AMAZING!! He said he won't see her go without her meds. I am so blessed with the people that God has placed in my life.