Friday, March 6, 2009

Costly Mistakes

Good news...we got your Medicaid last week! As of now, they are only willing to back pay until Feb 1 of 2009. All 8 of your surgeries, 10 weeks of hospital stay and every diagnostic test imaginable (sometimes twice) was done in 2008. So we are going to contest it on the basis of our caseworker not filing your application when she said she did. But the important thing is was I was able to move forward with scheduling surgeries for you!

It has been discouraging how slowly things have been going lately. Your glaucoma EUA is March 27--that isn't a big priority because everyone is pretty sure your glaucoma is stable and they won't need to operate.

I asked the optometrist to order your contacts again last week, but it still hasn't been done. They say they are waiting for approval from Medicaid, but I don't think they are being very diligent about hurrying the process along.

And the next date available for your ptosis surgery (which is what we are most anxious for) is April 24. I scheduled it Feb 25. Two whole months away. You will almost be 11 months old by that time. And that's assuming this one actually happens. I have no guarantee it will.

I feel like I have let you down when it comes to your vision. It hurts my heart that at 11 months old you still won't be able to hold your head up--which means you also won't be able to sit or balance. And it also makes it extremely tough to teach you how to swallow with your head always back. I don't even know how this has taken so long. We have been strung along a few weeks at a time, and it has added up to 9 months. I know it is partly my fault. There have been weeks, especially over the holidays, that I didn't check up on how things were going. I should have called every pediatric ptosis surgeon in Houston until I found one willing to do the surgery ASAP. After our first few surgeries were cancelled, I should have known better than to trust anyone, and gone with my instinct of ordering your contacts months ago. And when your contacts weren't ordered the first time like I was told they would be, I should have made such a fuss that they would order them rush delivery. I am the only voice you have, and I haven't been loud enough. I am so sorry.

But since I didn't do any of that, all I can do now is learn from my mistakes. I feel like maybe I should still try to find another surgeon, but I really have a lot of confidence in Urso, and want him to do the surgery. I am asking to schedule a back up surgery the week after April 24, just so that we don't have to wait another 2 months if it is cancelled again. And I am calling daily until your contacts have been ordered. By your first birthday, you should be able to see like any other baby. And in the meantime I am going to trust that God is going to do good things for you, despite my inadequacies.


Anonymous said...

Amber, please don't be so hard on yourself. You and Brad are doing a great job. It is so hard to fight the system let alone win.

Just remember, GOD IS in control, regardless of the system. This is part of the "Faith Walk" we all have to travel from time to time in our lives.

Your family is ALWAYS in my prayers.

Anonymous said...

Amber...your being to hard on yourself...

You and Brad have had a ton to deal with in the last nine months.

You are learning how to cope and breathe and find a new normal. And with everything that has happened and all that all of you have been will happen. Just don't beat yourself up, that won't help.

You and Brad have done a WONDERFUL job with Audrey! God gave her to the right parents...he knew you would be the best for her! Keep strong, love each other and remember that you are doing a GREAT job!

You have so many people behind you, holding you up...just lean when you need to.

Love to you and Brad and Audrey

Anonymous said...

Amber, do not do this to yourself! You and Brad are wonderful parents and girl, you are talking about medical insurance! Working with them is...well it's just horrible! When Savannah was due for her surgery, they even called the day before to tell me they wouldn't cover it, then called back 2 hours later to say they would. They did that to me 5 times before that day. It's been over almost a year, and I'm still battling payments and what was covered and what ID was it, etc, etc.
Unfortunately, you think that you should let people do their jobs, but when it comes to medical, sometimes they just need constant nudging.
hang in there, she is beautiful and despite everything, I still see you volunteering, I still see you smiling, and know that we are always praying for you and your family. And we are here for you!
We love you guys!
Sonja ( I could not remember my google id, hee hee)

Anonymous said...

Amber--You & Brad have done a wonderful job. Dealing with all the red tape involved in medical care these days and with insurance companies is very difficult and trying on everyone's patience. Remember most of these professionals and the insurance companies are businesses out to make money vs. really caring about what is best for Audrey. That is what makes your struggle to get them to pay attention and do what is right so much harder. You have done a GREAT job. God is in charge on all of this, all things are happening in his timing. Trust in him, continuing to do your best, and he will lead and guide you, never leaving your side.

Anonymous said...

Amber, you and Brad are incredible parents. It takes enormous amounts of energy to do what you are doing and the system is fighting you and playing games. How frustrating it must be for you! They don't know who they are dealing with. A parent's love will win out over red tape every time. You hang in there and keep up the fight. You will win. Never back down! We are praying for your beautiful family! The Nanninis