Tuesday, October 25, 2011

I Hate Waiting!

I am so exhausted. I don't mean tired. I mean I am exhausted to the core.  I have nothing left. Waiting is killing me.

It has only been a week since the Dancing Queen's cardiologist confirmed one of my worst fears. We are still waiting to hear the plan; to learn when DQ will have her seventh heart catheterization. I'm no good at waiting. And not knowing is so hard on me.

On top of that, I had to sit and wait in the hospital surgical suite for DQ today as she underwent a sedated brain scan hearing test. Waiting to hear how much damage has been done to her ears from multiple explosive and horrible ear infections. Waiting to hear whether we'll need to add further procedures or devices. I hate waiting. 

DQ was so good, but fairly miserable after from having an empty stomach and being under anesthesia for over an hour.  (Not to mention the vomiting/dry heaving she did from 4am through just before going into the OR because of how scared she was.) For the rest of the day, she wouldn't allow me to put her down for even a minute. As I held her, all I could think was why did she have to suffer through so much! The emotional roller coaster of it all takes a huge toll.

Tomorrow, I have to sit with the Dancing Queen in the same office I sat almost 2 years ago. I get to wait for the same doctor who gave me no hope 2 years ago; wait thinking that I have to ask him the same exact questions I did 2 years ago. Even worse though, I have to wait in that office, talk to that doctor, with so much more knowledge. And I have to list for him how often DQ gets sick. I need to convince him that something more needs to be done. That his decision to not help her immune system is only damaging her more and causing her heart and lungs to be overworked. Somehow, in my weak mental state, I have to stay sane in this situation. I have to keep my composure and not scream at him after I know he will make us wait for at least an hour (he is always late). I can't cry in his office. If I do, he won't help my baby because he'll just think I'm an emotion mom. But, frankly, I don't think I can keep myself even-keeled. (I can't even write this post without tears stinging my eyes.)


  1. if only there were something I could do to at least make the waiting a little more bearable...I cannot imagine how hard and upsetting today was or tomorrow will be.

    I am sending lots of good thoughts and vibes and energy and some hugs.


  2. I don't think there's anything I can say that DTC didn't. You know I'll be keeping my fingers crossed for you guys.

  3. I'm crying for you...and tonight and tomorrow I will pray with all of my heart for that doctor to listen and to do something.

    I love that little girl of yours...I truly do.

  4. I have been so busy this past week I must have missed your update on DQ needing a cath. I am so sorry dear friend. {{{HUG}}} Please know that I am saying many prayers for all of you.


Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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