Thursday, June 30, 2011

Feedback, I Miss You

Picking Eating Strawberries

Nolan's right hearing aid has not revived itself after several cycles in the Dry and Store. I heard a very faint squeal yesterday morning, but nothing since that point in time. I have a feeling it is completely and utterly dead.

We see his audiologist on July 5 for a confirmatory hearing test, so hopefully she'll have some insight into what has happened to the aid. I never thought I'd say it, but I would kill to hear just a little bit of feedback from that aid right about now. The thought of having to replace his hearing aids makes me kind of queasy - those puppies are not cheap.

In other news, we are still fighting the insurance company for approval to get a second opinion with genetics. Our pediatrician informed me that they are giving her a lot of grief. They reviewed his symptoms and told her that having an overall diagnosis wouldn't change his treatment plan.

Therein lies the rub: if we don't know what is the cause of the various systemic problems, we cannot treat Nolan appropriately. Certain diagnoses do change the treatment plan, since some things are contraindicated for certain conditions. In addition, what if Nolan has some central problem that is treatable? It would kill me to miss a condition which could be treated by an enzyme replacement therapy or other methods. The truth is, you cannot appropriately address the issues in a medically complex child when you don't know what the underlying cause of the problems is.

A fundoplication is contraindicated in many children with neuromuscular disorders, for instance, because motility problems cause pretty horrible side effects in some kids.

On the flip side, if the geneticist tells us that there is no underlying condition, then it is more likely that Nolan will outgrow some of his problems. There is absolutely no way I would have a fundoplication performed on Nolan if there is a chance that he will simply outgrow the reflux.

Hopefully we'll get the approval from the insurance company soon.


TheSweetOne said...

We're pullin' for you!!

Kimmy K said...

So sorry you are having to deal with all this insurance mess...again. It never ends, does it? Keep your chin up!

Julia said...

Blech! There's a woman on cicircle who once said, "Sometimes you have to put your Mommy gloves on and fight the good fight." Good luck!