Thursday, July 23, 2009

Moving On...

I got a lot of answers today as to why things haven't been moving along with Brady's scans...
The answer???

My doctor never ordered them! I struggle with whether or not I should put some things on the blog related to our dissatisfaction with our experiences, but I think if I am always honest, then perhaps our story will help someone else. I found all of this out by calling the MRI department for the 3rd day in a row. My wonderful nurse friend there and I have been playing phone tag. She finally got a hold of me and told me that they haven't been able to schedule Brady because they haven't received an order from the doctor. I emailed the doctor on July 16th, and she replied that she was putting in the order the next day. Thank goodness I saved all of the emails...

I was SO outraged by this, and so many other times that we have seemingly been forgotten, that I composed myself and called the oncology department. I told them what had happened, that I had emails documenting everything, and that this is not the first time our doctor has failed to communicate with us. I explained that I could no longer trust our doctor to do what she says she will, and that I am completely uncomfortable putting Brady's care in her hands. I then asked for a different doctor. I felt a little uneasy since I hadn't spoken to Matt about any of this, but I knew he would agree 100% (and they should be glad it wasn't him calling!!) A got a call back from a NP about 30 minutes later who wanted to know the whole story. I told her about this incident, about our doctor not remembering that she had met with us regarding Brady's post-op scans, and how no one called me back 3 weeks ago when I was concerned about his belly. She asked me to forward her the emails that I had, so I did.

An hour or so later, the secretary called me with a date of July 30th for scans, and an appointment August 5th with a new doctor. I'm sad that we are starting over with a new doctor (seems to be a trend in our lives lately). However, I will never, ever apologize for expecting Brady's doctor to communicate with us and treat him as though he matters. So, one week from today we go to Strong for MRIs of Brady spine and abdomen, as well as blood/urine tests. Then we have to wait until the next week to meet with the new doctor (who by the way we liked very much when we met him right after Brady's diagnosis). I also reiterated to the NP our requests regarding anesthesia. I'm not sure what will happen on that, I have a feeling we will be hashing it out with the anesthesiologists that day.

In other "Brady News": Brady had a GREAT day at PT today. He was a willing and energetic participant in all activities! I was very proud of him!

This Saturday at Dwyer Stadium (where the Muckdogs play) the Michael Napoleone Memorial Foundation will be holding a Youth Baseball Tournament. It actually runs from Friday-Sunday. On Saturday you can come to the stadium throughout the day and enjoy free baseball, raffles, food, and free crafts for kids! There is an awareness ceremony at 6pm on the field. I will be speaking and singing (please be praying for me!). Come out and support a great cause!!!


  1. What time do you sing on Saturday? We are having Grace's party that afternoon. By the way I am very proud of you for voicing your concerns and taking charge.It is not easy being a mom under normal circumstances but what you have to endure talking to highly educated people who have dropped the ball must be very frustrating. Hang in there, you are doing GREAT!!!!

  2. wow...singing too!! as for the dr thing...well, you go girl. i think you are right. don't apologize for expecting superior care for brady...he deserves it and so do you. maybe this time will be the exact dr you need.

  3. Hello Meg,
    I am glad to hear you have made some small progress with the hospital. I wish you the best at talking and singing, I am sure you will do wonderful, you have a beautiful voice!!!


  4. As a mom of preemie triplets and their big brother (they are 6 1/2 and he is 10), I am so proud of you for standing up for Brady and demanding the care he and your family deserves.
    So many times I had to fight for my kids to get the care they deserve also. It is very frustrating, but if it wasn't for us who would right?

  5. If we parents don't stand up for our children, who will? My Doctor told me that my 'hunch' that something was wrong with her was all in my head and me starting her in physical therapy at 12 months of age would make me feel better but probably not help our daughter in the long wrong.

    Wrong. Our daughter is 1 of 2 people in the world with a rarer than rare condition and if I hadn't pushed and pushed and pushed for tests at her 18 mth check up, how long would it have taken them to find it?

    p.s. She's 6 now and thanks to all that therapy, she's doing well. Still lags behind her peers but I couldn't give a hoot.

    Congratulations on being the Mama Lioness than our little cubs need!

  6. Good for you! that is unacceptable.

  7. Hi just wondering when u said that your Dr. never ordered the scans.. are you referring to your Dr. at Sloan?

  8. YOU GO GIRL!!! As a mom/friend/fellow "take it by the horns" kind of did the right thing sticking up for Brady (to the Dr). Sometimes, I wonder what these Drs would do if there children were treated the way many of them treat their patients. AAAUUUGGGHHHH!!!! I feel your frustration! I will continue to pray for Brady and this new Dr...Maybe he will be more inclined to listen/hear what you are saying.
    Good luck with the singing...I could not carry a tune if you gave me a box to put it in, so I am in awe of your talent.
    May God Bless You and Keep You!

  9. Good for you, standing up for your son. if you don't do it, no one will. Never, ever apologize for that.

    PS I am so sorry i haven't been around often. We are in the process of moving, so it's been hectic, but please know that Brady and your family are ALWAYS in my thoughts and prayers.


  10. In response to Annonymous' question:
    No, it is our doctor at Strong who never ordered the scans. We made the decision to stay here for follow up, emailed her, and she never did what she said she would. Not the first time, but it just has to be the last...

  11. How frustrating. I cant even believe that with the nature of Brady's illness, they would be so careless.

  12. My kind of girl:) Take the bull by the horns, way to go!

    My suggestion w/the anesthesia is to call and find out if there is someone the head of that department and start hashing to get what you want now! tell them what has happened w/Brady and this now OLD doctor, and not having the anesthesia go right is the last thing Brady needs in the world!!

    Of course there are many anesthesiologists but i think its possible to get the ball rolling.
    The red tape is a whole other story in itself isn't it?

    We will be praying about saturday, keep your chin up, it's funny how we mamas become like tigers let out of their cage when our children are involved isn't it? Look OUT!!

  13. So very frustrating! I am glad you are sharing! I finally shared this week my experience with the NICU when my son was born and feel much better. There are many people out there that understand your frustrations and more that will learn from your experiences.

    hugs, melanie

  14. You surely did the right thing, Megan. Look back---every move that you have made has been the right one for all of you. The prayers are working!!!!
    Put some extra $$ in your purse on Thursday, and buy that boy some donuts after his scans. :-)

  15. good for you megan.....a mom's got to do what a mom's got to do......and when you're baby is involved.....that's just about anything!

    good luck on saturday..i'm sure you'll be great!

  16. Megan...I just have one thing to say...


  17. Meg,
    You are your child's advocat and sometimes you need to stand up and be heard. I am so sorry that I will not beable to hear you speak and sing on Saturday.
    Love, Deb R.

  18. Great job, Meg! Way to stand up!!



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