Monday, April 6, 2009

Trying to play nice

Wish us luck tomorrow. We will be having another dr appt. This time it is with the Pediatric Retina Specialist who we were referred to at the very beginning. This specialist is covered under our insurance.

I am not a happy camper.

Gavin will have to have his eyes numbed, then dilated, then specula/speculum inserted (possibly). He will have to lay on my lap while I hold his arms and legs down and Troy has to hold his head still. All the while he is screaming as the dr. probes to get a good look at his retina and optic nerve. This will be the 4th time he has had to undergo this. This doctor will tell us what we already know. "Blah blah, he has a form of retinal dystrophy, blah blah... but I won't know until the ERG is done... blah blah blah."

I don't mean to sound... well, mean. It's just frustrating to know he has to go through another 3 hour "observation" appointment for another specialist to tell me, that yes, my son cannot see. Lovely.

All of this, just to show the Insurance Company we are complying with their wishes to see this doctor. Whatever.

The objective of this appt is to get this Dr, to wash his hands of Gavin as a patient, and tell the insurance company that he is in better hands with Dr. Lee at CHLA. Let's see if that happens. I have optimism, but it's dismal at this point. I am hightly irritated. I don't want the window of opportunity to close in on us for the clinical trial study. Dr. Lee says he gets the best reading from the ERG when the patient is between 4 and 6 months. Gavin was 6 months last Thursday.

This all comes down to money. The insurance gets paid either way. It's down to playing a game now and who "is responsible" even though everyone gets paid. Boggles my mind.

I was informed to"NOT get crazy" and play nice with the insurance. My husband knows I am on my last straw. We both are. Anyhow, don't mean to sound too frustrated, it's just a little difficult to hold it in. I am most upset about Gavin having to undergo this just to play politics and follow protocol, so we look good on paper.

His eyeball probing tomorrow will be disturbing and is NOT necessary.

I'm glad the game playing by the insurance deems it necessary. I would like to invite them to the 3 hour exam and restrain my son, and try to comfort him as he lays helpless, forced to fight the restraint of his parents grip, and writhe in anxiety, fear and discomfort. I would also like to invite them back to our home and try to keep him comfortable when we return from our appointment. The following hours after eye dilation are also not a walk in the park. He is not in pain (I don't think), but he is even MORE sensitive to light due to the dilation. That will last through the night. I would like them to observe the necessity of this. All so it looks good on paper. With no real understanding of what my son has to endure.

I'm sure they are busy though and cannot make it.

What a shame.

I apologize for the negativity of this post. I hope this Dr. can point something out to us we don't already know.

Wish us luck...


  1. I wish you luck tomorrow. Stay strong... we will be thinking of you.

    - Stephanie

  2. We too are hoping for the best.

    i'm hoping once this is done you can proceed and get the ERG and get the answers you deserve as parents. i'm so sorry little guy has to do this again. and for no real reason (medically speaking).

    lotsa love ~kristen


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