Sunday, March 15, 2009

I think I'm done...

Of course, the thought has crossed my mind, but I think it is time to take a trip to Mayo in Rochester. A dear friend from high school sent me a note in response to a request. Her father is the best upper GI doc here in the city. Although his practice does not see pediatric patients, I asked for her father’s opinion regarding the complexity of Elliot’s medical status.

“Take him to Mayo.”

He indicated that the physicians at Children’s should oblige. We’ll see. I won't bother asking for the referral from our PCP locally. They will laugh at me and I have had enough of that.

But as things become more and more mysterious, I think we need to see the best of the best. I cannot deal with anymore behavior that I consider to be worse than inept.

Anyone been? Tips for a scared momma?

9 comments:

Mommy to those Special Ks said...

We have SO been to that point and when it's your child, sometimes you DO need to step out of your comfort zone and go to the best. There's absolutely nothing wrong with that. I will be praying that the doctors at Children's don't give you a hard time about it. I will be praying that you get answers. I know what a horrible feeling it is to not know what's going on with your child. You're doing the right thing. You're a GREAT mom, keep fighting! We're here to support you however we can, and we're praying.

datri said...

Just wanted to send you some hugs. Praying everything works out. Keep fighting!

Childlife said...

Michelle -- Just had to stop by and let you know that you're family is in our prayers. This post wrenched my heart -- I so know what you're feeling right now.

For what it's worth, we made a similar decision in our daughter's care four years ago. It was tough -- kind of felt light jumping without a safety net, but we've never regretted it. Our local specialist dropped us when he learned we had gotten a second opinion. We found ourselves trying to locate a new local specialist while in the middle of coordinating a complex out-of-state series of surgeries.

At the same time, as our other second opinion, we sought out a top GI specialist located in the same city as our specialty surgeon. It was so scary to do, but we ended up with a GI diagnosis and treatment plan that had eluded us for two years, a string of successful surgeries, new local specialists who respect us both as parents and members of our daughter's health-care team, and most importantly, a state of health for our little girl we had been previously led to believe would never be possible.

You are one courageous Mommy, and I will be praying.

~Michelle @ In The Life of a Child / 5MFSN

Melissa @ Banana Migraine said...

Just sending you support and love. I hope that you get there easily and finally get some answers dear Michelle.

Stephanie said...

It is easy to fire doctors. I've done it a few times.

Though it is inconvenient, sometimes traveling is the for the best.

Kelly Zimm said...

Sending some prayers and love your way, Michelle!
Elliott is so lucky to have you for his mommy!
I think you're doing the right thing!

Christina said...

Sorry no tips, just a big hug for all of you!

We are thinking about youa cross the pond!

luvmypeanut said...

We didn't need a referral, but our insurance didn't require one. I can't remember if they were considered out of network or not.

We really liked the Mayo clinic and the doctor we saw. It was immunology, so can't help you much there. Go out to the Mayo website and they have pointers on what to do etc. Best wishes!

Lisa said...

Sending lots of hugs your way! And I absolutely think you should go to Mayo. Althouh I have not been there personally, I have been through enough medical stuff between myself, Lily and relatives to know it best to get second opinions and best to find the best doctors!!! Any good doctor would want you to get second opinions and seek out the best especially when you are dealing with such complicated issues. Hang in there and I hope Elliot is starting to heal.

Lisa - Lily's mommy