Sunday, January 13, 2013

Grrr

Clearly I have not written a post in a while. It might even be the longest I've ever gone without blogging  since I started nearly three years ago.

I suppose you could call it "writer's block" but that's not exactly it.

The real reason I haven't written any new posts in so long is a bit more complex. And for the sake of honestly here it is...

I didn't want yet another post about how hard things have been with Tessie. I mean, they must all start to sound the same after a while. So instead, I have been patiently waiting for something to write about that would be funny. Light hearted. A little anecdote to maybe make you laugh. Something that I could say to myself, "Aha! This would make a funny post."

And so, my little blog has been very quiet.

The last few weeks have been brutal in regards to Tessie. As in, I want to bawl my eyes out and/or smack-the-ever-loving-crap-out-of-someone, brutal.

Remember a couple of posts ago how I talked about Tess needing bilateral hip surgery sometime in the next six months? Well, the next appointment she has with the Orthopedic Surgeon is not until April and even then it is only a consult, which wouldn't be a big deal except now my little Toodle Bug is in pain. A lot of pain. Wake up in the night, sobbing her little heart out pain. I can actually watch her pupils dilate from it. She cries some during the day as well but it mostly hurts at night. Which makes for long nights and a third person in the bed. Which makes for a tired mama and daddy. And you can imagine how happy being over-tired and over-stressed is making us.

The docs in charge have tweaked her medications a few times to try to control the pain and right now, finally, it seems like it might be working.

But here's my beef. WHY aren't they just scheduling the GD surgery?!?! WHAT reasoning are they using that tells them that it is better to ADD medications and drug the kid up for the next THREE MONTHS AT LEAST rather than deal with the problem?

I just don't get it.

But I will. Because tomorrow I am calling Boston and I refuse to give up until I speak with her surgeon.

No kid deserves to be made to live in pain. Especially pain that the doctors already know needs to be addressed with a major surgery. Especially when the wait for an appointment means three more months of pain and the side effects of the medications used to treat it.

Especially Tessie Toodles.

In the words of her pediatrician, "You don't want to bring mama bear out of the cave."

Well guess what?  Grrr.






6 comments:

  1. First, LOVE the bear pic. Feel like it should be made into a pin and worn to all doctor's appt.
    Second, that really sounds ridiculous to have to wait.
    Third, oh good grief I hate to wish you good luck with the phone call but ugh, it's so frustrating hearing back from them. So here's to persistence.

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  2. Haha! Thanks! I think if I can get to talk to Dr. M personally than I will be able to convince him to fast forward everything or, worst case, at least be able to understand why he doesn't want to do the surgery sooner.

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  3. This just makes me SO MAD! There is NO reason that sweet baby girl should be in so much pain on top of everything else she has to deal with.

    I'm totally with you - if surgery is inevitable, then why wait so long???

    I remember when Lily needed open heart surgery, the surgeon in Austin wanted us to wait until Lily weighed 11 pounds. Well, we had decided to go to Houston for the surgery anyway and when we met with her surgeon there a few weeks after the consult with the Austin doc, the Houston surgeon asked us what we were waiting on!! When we told him the doctor had said 11 pounds, he just said this:

    "This is not an issue of weight. Your child has a hole in her heart that is not going away. She definitely needs surgery. The risks of waiting are bigger than the risk of surgery. Let's get this done sooner rather than later and get you baby on the road to recovery."

    Makes perfect sense, right? And of course, that's what we did.

    So you get that surgeon on the phone, Mama Bear! And you tell him that unless he gives you a real good medical reason to wait, let's do this thing!

    Prayers for all of you...

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  4. I found your blog from Along came the bird and I just read your post. That makes me angry! I really do hope that you could talk to the surgeon and that the surgery can be done asap!
    Love,
    Joy

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  5. Hi Joy! Thank you...I am calling Boston again today. I hope you enjoy my blog...I promise, there are funny posts too! :) ~Joanna

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  6. Persistance pays off and you have done it again. When they see sweet little toodle but on Tuesday I am sure she will have surgury really really soon. Or maybe I should have said when they see YOU on Tuesday they will set up her surgery really really soon. Love the Toodles

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