Friday, July 10, 2009

Reading Between the Lines

Doctors never like to tell you what is going on. Not until they have an exact answer. So they do things like say, "Hmmm, there is an air bubble in her abdomen, so I can't get a clear picture. Let me get a look from this angle." When what they mean is, "Emmi's is kidney is badly deformed, but I don't want to tell you until I know exactly what it is and how I am going to treat it." After years of this, you learn to read between the lines. You learn to hear what they aren't saying, and you figure out when they are protecting me from the truth. The thing is? I handle the truth much better. Just get it out there. Let me deal. Don't make me guess and wonder and imagine the worse case scenario. Because sometimes I imagine even worse that what it ends up being. Which is why today, I am convinced there is something really wrong with Emmi.

When all of this implant failure hoopla began last week, a CT scan was ordered. Then, the doctor decided it was unnecessary. Surgery would happen either way. On Wednesday at the team meeting (which included Emmi's geneticist, neurologist, renal specialist, and craniofacial surgeon) they decided the CT scan would happen afterall. When I asked why, the answer I got was this, "Well it is needed for insurance documentation. But don't worry, regardless of what they find, the surgery will still happen." So I pressed more. "So if it isn't necessary for approval, then why do we need it for insurance?" The answer became more convoluted. "Well insurance doesn't need, they just need it in case insurance needs it. But is doesn't affect approval. We just need in case we need it for approval." Uh. Excuse me what?

The thing is, I already know that the ONLY other case of migration occurred due to a bony growth. I can only assume they are looking for some kind of growth or tumor. What I don't know is, are they looking for cancer? Do they suspect something benign? Does her geneticist suspect something? Was it the neurologist? I know it wasn't the ENT. He already directly told me he did NOT want to do the CT. So I know it was one of the other doctors that suggested it. But who? And why?

Now I am left to worry. And I would really just do better dealing with whatever I need to deal with.

PS I just got the call that we received final insurance approval for the surgery.


Aimee' said...

I'm a few days late on this but I'm sorry the doctors are doing this to you!! I hope you find the answers you need/want!

Kristina said...

When we were going through all the tests to find out the cause of Emma's deafness, we were anxious for the MRI results to show that Emma had an auditory never. We had no idea that there were other things lurking in that scan, but the geneticist called us with the results (not the ENT who ordered the scan) right before the Christmas holidays and had us worry terribly due to his *deciphering* the scan.

Well, we did find out that the cause of Emma's deafness isn't genetic, it's from a CMV virus while in utero. The geneticist is a great man and I respect and like him, but in trying to be helpful he caused a lot of excess worry and craziness for us. I say, wait until you know what the reason for the scan is before you get too worked up. Maybe your geneticist is just stirring the pot a bit like ours did.

Sorry you are going through all this. I know our kids go through it physically, but they have no idea of all the anxiety that the mom goes through!

Will say some extra special prayers for Emmi.

Allison said...

Praying for you and yours.

I am Trish Marie said...

She does have a new geneticist, so my thought is it is him. Our geneticist retired. Anyway, my hope is that it is him. He knows her the least, and so it would seem just like he was covering all bases.

El said...

I am so sorry you all are going through a failure! I hope the surgery goes great and it's nothing "but" an implant failure.