Peyton went to Texas Children's Hospital this morning for her echocardiogram. This test was the result of the past few months of frustration which began with the ill-fated trip to the cardiologist way back in February. The visit where I drove all the way out there only to find out they had no information on Peyton, therefore no appointment. After a lot of runaround, an echocardiogram was finally scheduled. Typically they will sedate the kids. Since Peyton has sleep apnea, this wasn't an option. So, I was already curious as to how this would play out today. In my heart I think I knew what the end-result of today would be. I should have just not gone and saved myself a lot of bother. After rearranging my schedule to have this done, well, wouldn't you know, they couldn't do the echo. Peyton was too fussy and was moving around too much to get anything accomplished. The tech was not pleasant at all and she made me feel guilty for not being able to keep my child calm. Well excuse me for having a seriously developmentally delayed child who is extremely sensitive to people touching her! The only alternative was sedation, but since the sedation orders were nixed, they couldn't do anything. Besides, with the feeding restrictions prior to sedation, even if they could do it, they couldn't do it today. I said she can't have the light sedation because of the apnea - that was why the orders for sedation were cancelled. I also said the reason she was having the echo was BECAUSE of the apnea. I said why the appointment was not scheduled to be done under a general anesthetic was beyond me. I was SO furious. I just sat in the lobby and cried and vented to Ron on the phone for a while before getting on the road. I should just expect by now that this is our luck.
So, on the drive back, I happened to glance back at Peyton to discover only one hearing aid in. First chance I got, I pulled off the freeway and did a thorough search. Nothing. I drove all the way BACK to the hospital. Of course, the garage was full, so I had to go to another and walk all the way back. I searched the area in the garage where we'd been. I went to the first floor reception. They hadn't had anyone drop off a lost hearing aid. I went to lost and found. Nothing. I went back up to the 20th floor cardio lab. They searched the linens. Nothing. I went back to the garage and searched again. Nothing. Of course, anyone I actually spoke with didn't seem the least bit interested so I wasn't able to leave my contact info. Hard to do when people just turn their backs on you and move on to their next bit of business.
So, after a horrible start to the morning in the echo lab, we're now down a hearing aid. And, yes, it is the SAME hearing aid which was already replaced. The warranty covers 1 replacement in a 3 year period. So, yeah, this one's on us.
In a continuation of this wonderful day, I'm off shortly to what will probably be Peyton's 3rd last therapy session for who knows how long, as the provider will at that time force us to pay $100 per visit (twice a week) in anticipation of problems with the insurance company. Nothing I say does anything to help. They are adamant that the insurance is going to pull the same stunt after 25 visits as they did last year when we wound up with over $1,600 in denied claims which still remain unpaid. According to my HR and the insurance company, 2008 claims ARE being processed in accordance with our plan and each claims is reviewed for medical necessity as we long-ago passed the 25 visit mark with this diagnosis (they review for necessity after 25 visits and then every visit after that is individually reviewed for necessity - it just happens that mid-Oct. through Dec. were denied and as of her first 2008 visit, all claims have been approved which just seems a little fishy). Anyway, again, nothing like the feeling of not being able to provide your child the things she needs.
I'm not having a good day at all and, in fact, am pretty much at an all-time emotional low where this is concerned. I'm just so tired of the runaround we get everywhere we go. I'm tired of things not being done that need to be done. I'm tired of so much more. But I have to wake up (insanely early) each day, throw a smile on my face, and pretend each and every day that life isn't they way it really is...because let's face it, sitting at my desk at work crying all day isn't really professional. And that opens up a whole other issue....maybe another day.
Why things have to be so difficult every time I turn around is beyond me. I just wish we could all get a break down here. Last I checked, I didn't think any of us did anything to deserve what life keeps throwing at us.