Aug 26 – Where to go from here…

26 Aug

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I thought today would bring answers & a game plan and we would be on our way to getting Rosalie well & living a normal life.

Things don’t always turn out the way we imagine, do they?

Rosalie’s appointment did not go so well. After all those tests, all that lab work, the doctor just sort of said, “well, we aren’t sure what’s wrong or how to help her, so you’re on your own!” No answers. He wasn’t even sure where some of the test results were. But he did tell us she’s probably gonna have asthma? Huh?

I cannot tell you how upset I was. We were thisclose to arguing with each other because he started backtracking on every single thing he’s ever said to me and I called him out on each thing. I have rearranged my LIFE because this man told me to do everything to protect my child. She hasn’t had an ANC over 560 since she was two months old, her lowest was 94 (normal is 2,500 – 5,000), she has low immunoglobulins, and now this man is telling me to go about my normal life and she’ll be fine?!? Sure, so she can be like some other neutropenic children I’ve heard about who got their first & LAST bacterial infections while their poor mommies were being given the runaround?!

I finally just shut my mouth. He obviously had no clue what he was talking about anyway. He gave us an appointment to see him in a month. I have absolutely no idea why. If he thinks I’m driving 3.5 hours for them to do a CBC and say hello…that’s NOT happening. And if he makes one more comment about onions or us being from Vidalia, I might scream. Dude, we live in VALDOSTA!!!!

Sorry, can you tell I’m a little frustrated?

We will be meeting with our pediatrician on Wednesday so we can talk to him about everything and decide what to do. I emailed the “top” neutropenia doc in the US asking for some guidance. We are more than willing to travel to see him if necessary. I hope I hear from him before I meet with our pediatrician. I have been told that he is good about communicating via email. Fingers crossed.

Please say some prayers for Rosalie & Mary Beth. And for my sanity. MB is going through something right now….it’s like the terrible twos on steroids. If you were at church with us Sunday you probably witnessed a little bit of it. I have never been so embarrassed. Please. Just say a prayer. 🙂

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7 Responses to “Aug 26 – Where to go from here…”

  1. Angie August 26, 2013 at 10:49 pm #

    We’ve been through the run around with doctors. We’ve learned to just go somewhere else if they aren’t giving you want you want. Remember, you are the client. They work for you. So there isn’t anything wrong with doing your own research and telling them what you want done. It’s a business. The best thing you can do is educate yourself and find a doctor that really cares about your child. We did and it saved our sons life. If we would have listened to the first doctor he had he would be dead. I know that sounds harsh but its true. You have to be an advocate for your baby. I know it’s hard but hang In there. I can’t say it’s gonna get easier or get better but we love our kids and that’s why we do what we do.

    • sogamom August 26, 2013 at 10:56 pm #

      Thank you! I agree & need to hear that. I’m just so discouraged & confused right now. We will definitely be getting a second opinion.

  2. Holly Bishop August 27, 2013 at 12:26 am #

    Agreed. Been in that same boat when we were told Z had cystic fibrosis by a dr. It was later confirmed that she was WRONG and that is abnormal breathing/pneumonia episodes were asthma. Not CF.

    You are sweet Rosalie’s MOM. God chose YOU. You. Not anyone else, and he is still in TOTAL control of your journey. REST in that. I know you are frustrated, but be secure in the fact that the KING OF THE WORLD has delivered this sweet baby to you to protect, nurture, love, and help her grow into a beautiful young lady. This journey is just a piece of the puzzle that is being put together. Maybe your sweet baby has changed this weirdo doctor’s life today. Maybe you did when you walked out of his office baffled at his inability to retain an opinion over a few months. You never know what His plan is, but you can rest in the fact that it is for the greater good. You are learning lessons mama, right now! You are being equipped for what is to come, or what you are going to teach another mama!

    Z’s little life verse is Joshua 1:9: Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” EVERYWHERE. Saying prayers for your family. Keep us updated on your journey.

  3. Sabrina Bailey August 27, 2013 at 7:16 am #

    You and your sweet family are in my prayers. Please call me if I can help – if you need to get out of the house I will be glad to sit with the children. Love ya’ll

    • sogamom August 27, 2013 at 7:46 am #

      Thank you! Love you!

  4. Diane August 28, 2013 at 8:55 am #

    Oh mama…how frustrating. You are the only true advocate for R and you need to do whatever it takes to gt answers. It’s sad that some healthcare professionals are this way. You guys are in my prayers daily!

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