Thursday, July 21, 2011

Oh so discouraging!

Warning: Whining!

So I'll start by acknowledging the good before rambling about the bad. If your child is going to born with a birth defect their are much worse options than congenital cataracts. The fact is, Kevin has one good eye and not having one eye work is not life threatening or anything of the sort. Also I am so glad we had insurance to cover his 2 surgeries and that Primary Children's also did approve us for some financial assistance on what insurance didn't cover. Also I know lots of children rack up way more medical expenses than Kevin has even though it feels like he has cost us so much.

Kevin's 90 days post op appointments (included in the cost of the surgery) are now over which means we get to pay for all his appts. Ryan is still applying and interviewing for jobs regularly but as of yet there are still no official job offers on the table which means no insurance and not nearly enough cash to make up the difference.

Kevin has tried several different kinds of lens' but they all cost a lot of money and get lost all the time. I have reached my breaking point and can not bring myself to order a new one to replace the latest one which was last seen on Tuesday. He is very mobile now so it could be anywhere including down the shower drain or toilet.
When the lens' are not lost and are in his eye they spend 80% of their time hiding in the top of his eye doing him absolutely NO GOOD. It is nearly impossible to get them down and he hates it when you try... makes you feel so awful.
To top it off I'm supposed to not only magically get the lens' to stay in his eye and in place but also patch his good eye to force him to use the bad one for a couple hours a day... Let me just tell you that this is MUCH easier said than done.
When he has a patch on he freaks out. Literally does not stop screaming until he forces himself to sleep as a defense against having to try. Also he is pretty strong and smart now so he is very skilled at getting off all kinds of said patches. It feels so pointless to spend time holding and attempting to console him while forcing him not to rip the patch off if he is just going to close his eyes 15 minutes later anyway.
Everyone asks why not make him wear goggles so the lens can't get lost and the doctor who does the lens fitting said that he would just take it off the same way he takes off patches.
People ask why not glasses... For one he wouldn't leave them on either but more importantly I don't think they would do the trick because they wouldn't be strong enough.

Dr. Larson told me after Kevin's failed IOL implant that he could possibly stitch a lens to the inside of Kevin's eye. I'm at the point where I am ready for this option but then we are back to the money issue. No money and no insurance would make for a very interesting surgical situation.

I feel so trapped. I used to be positive about the whole thing but as he's getting older and things are getting harder I just get so discouraged. I feel like so much pressure is just weighing on my shoulders to make this work but I have no idea how. Kevin and his doctors are depending on me to get him to see and I feel like I've failed.

1 comment:

Liz said...

My Grandpa lost his eye when he was fairly young. My brother has horrible vision in one eye. Both are great. It sounds like you are doing as much as you can. I'm wondering if you could get on medicaid/chip. Pete's on medicaid and it's wonderful.