I just have to make a quick call...

Another week, and no updates!  Here's what's happened:

Harlie's BAHA (bone-anchored hearing aid):

I don't know if you remember, but we borrowed a BAHA from Harlie's audiologist to test it out and see if it helped.  And it did.  It worked so well that we kept it until she asked for it back.  So, she ordered one for Harlie.  It took a while for all the paperwork and authorizations to go though, of course.  And we got it on Monday.  

The aid sits on the bony area behind her left ear (her side with no hearing).  So, she has an aid on each side.  The soft band is so much nicer than the one that was on the loaner aid.  The loaner one was velcro, which made it difficult to get it tight enough, without it being too tight.  So, while she would ask for the BAHA at school (or say "yes" when asked if she wanted it) she could only wear it for a couple of hours at a time.

This one is adjustable by sliding it, so it's a lot easier to get it to a more comfortable fit.  And I can tell because on Tuesday morning I put it on her before we left for school.  I was thinking she might tolerate it for a few hours, at most.  So, imagine my complete surprise when she came home and was STILL wearing it!  Terri said she never messed with it or wanted to take it off.  Wow!  And I got an e-mail from her hearing impaired teacher that said she did awesome with her BAHA and that her eye contact was amazing while wearing it!  Woohoo!!!

Of course I can't help but think we should have done this years ago.  While I know that hindsight is 20/20, it is still hard to stop myself from thinking if only.  Maybe she would be further along academically.  She would definitely have been exposed to way more language.  I know I shouldn't beat myself up.  But, I would like it noted that I never really had any one lobby for a BAHA - even when she was young.  Why didn't some doctor, nurse or therapist try to talk me into it?  Tell me the benefits, the positives???  I don't know, maybe it was brought up.  Maybe I didn't hear it.  Maybe I had my hands full with life or death decisions.  Grrrr.

Gotta shake it off and move on.  She has one now and she clearly loves being able to hear more, or better or whatever she's getting out of it.  It doesn't do much for her hair fashion, but I suppose hearing is more important.  ;-)

Holter Monitor Results:

You might remember that last week Harlie had a Holter Monitor for one night.  Well, the results are in and her lowest sustained heart rate was 38, highest was 79 and mean was 47.  So, it is now confirmed that she does, in fact, need the pacemaker.  :-(  So, we are now looking at available dates to get that done.

While we don't need to rush to the ER because of it, I don't really want to wait, either.  We have a couple options within the next two weeks.  But I need to talk it over with Tom and we haven't had a chance yet.  It's hard to focus when the kids are screaming and running around.  So, we'll have to wait till after they go to bed.

What I did today:

So, one thing that's been on my to-do list for weeks (okay two months) is to make a phone call to Medicaid to see what our financial options are (if any) as far as going out of state for medical care.  Plus, I was told that they reimburse for travel expenses (something I can't believe I've never investigated after all the freaking miles we've racked).  I got a name and number of who to call several weeks ago.  I've called numerous times, but there's always been a recording that said something about the mail box being full and to try back later.  But, we're now exactly one week from traveling - so I've run out of time.  So, I need to make more of an effort.  Here's how it went (and my answer to why I've never done this before):

1.  I called the number again, same message.

2.  I searched their website and could not find what I needed, so I called the main number to the Dept. of Medical Assistance, went through the whole automated system and finally got to a place where I could press 0 for an operator.  Finally I get a real person and I told her what I was looking for and she said she needed to transfer me to another department.

3.  I got disconnected.

4.  I called back.  She gave me another number to call.

5.  I called the number she gave me, just to hear a message that said, "Due to circumstances out of our control your call could not be completed at this time. Please try back later."

6.  I called the main number again.  Told her about the message.  She said, with annoyance and attitude, "Well, ma'am, you just need to keep trying."  One thing that always gets me is how parents get treated when we are already doing something we never wanted to do.  I don't have to do this crap for my healthy kids.  Did she think this was fun for me?  Hell, at least she's getting paid!  Not me.  Nope I do this kind of crap for free - all the freaking time.  For five freaking years.  No bonus.  No vacation time.  So to try to make her realize that being nice is better I embellished a bit and said, "Look, I have a sick daughter and I'm just trying to get her the medical help she needs.  I don't work there.  I don't know this system.  Can you please just help me?"  Well, let me tell you, that changed her tune.  She got real nice after that.  She said that the number that I first tried (for weeks) is broken so she'll e-mail her and have her call me.  So I asked for her e-mail address so I could do that myself.  Which she gave me.  And then told me to have a nice day.

7.  I kept trying the second number she gave me.  Gave up and called my Medicaid case worker (who is awesome and very good about returning my calls).  I left a message.

8.  I continued to try to get through to that number and I finally got through, got an automated system, went through that and finally got a real person.   Yay!  Gave her my info and she said, "I'm sorry, ma'am, I can see that you are her parent, but you are not listed as an authorized representative on her file.  So, you need to call the Department of Social Services and ask for worker ID #_____, tell him or her that they need to list you as an authorized representative to speak on your daughter's behalf and then call me back and then I can talk to you."

9.  After many deep breaths, I call the Department of Social Services and unbelievably, our social worker was there and available.  She said, "WHAT?!? How old is your daughter?"  I said, "Five."  She said, "This is crazy!  You aren't listed as an authorized representative because your child is under 18 and you are her PARENT!"  She was slightly annoyed.  She then apologized for it (even though it wasn't her fault) and then put me in there as a rep anyway.  She was very nice and helpful.  All was good again.

10.  I called that number again, and started the process over.  Luckily, I got a nice woman this time and she answered my questions.  One - no, they cannot help us if a hospital in another state does not want to enroll in Virginia Medicaid.  We're on our own with private insurance and having to pay out of network costs (I don't even want to think about that right now).  Two - for travel reimbursement info, I need to call another number.

11.  I called that number. Got a nice guy.  I gave him my info and he plugged it into the computer.  When I gave him my address, he said, "Oh, I used to live there."  So, I said, "Where are you now?" (because I thought it was a local company) and he tells me some city in Virginia (can't remember now).  Then he asks me where we're going for treatment.  I give him the address in Boston.  And I hear him plug it into his computer.  Then he exclaims, "Wow!  That's over 500 miles away!"  Um, duh?  Boston is in Massachusetts and you live in Virginia.  Certainly you knew it was gonna be far, right?  Anyway, so he says, "Oh, you have to call a different number for that, and all I have to say is good luck."  Are you kidding me?  I cannot help but think no amount of money is worth all this frustration and time.  Oh, my precious time...

12.  I called that number and got a recording that they were not available and to leave a message.  So I left a message.  I'm pretty sure I'm never going to get a call back.

13.  I hear back from my Medicaid case worker.  See?  I told you she was good about calling me back.  And she's always so helpful!  So, she tells me what I need to do if we decide to have surgery there.

14.  She calls me again to tell me that she investigated the travel reimbursement thing more.  And that I need to get a letter of medical necessity from her local doctor and have him fax it to Dr. Adiele with DMAS so he can approve it and then forward to transportation.  Okay.  Got it.

By then, the kids were coming home from school and Cooper was waking up from his nap.  There went my quiet time.  And my ability to make any more phone calls.  Okay, so my ability to make any more phone calls was probably more affected by the previous 14+.

So, on Monday, I'm going to have to make more phone calls.  Awesome.


It occurs to me as I write this that I still have no idea what kind of reimbursement we could get - if any.  Full price of plane tickets?  I doubt it.  But I'm in too far now to quit.   

On another note...

Thank you for all your support on my book deal.  I can't tell you how much it means to me.  Being able to talk to you through my blog has been a life-saver.  Thank you for always being here for me!

Love,
Christy xo