Archive for September, 2014

Let’s Go Drive in a 500-Year Flood!

Wednesday, September 10th, 2014

Because our lives are not complex enough, Maria had a barium swallow scheduled for early the morning of the highest one day rainfall ever recorded in Phoenix history since they have been keeping records. One newscaster called it a 500-year flood, not sure if that’s true or not, but it sounds super dramatic!

I knew the 51 highway was closed, so we left early and went down 7th street. After driving for an hour (usually takes 30-40 minutes), and being about half way there, I made a couple phone calls and they said it would be better to reschedule. What she didn’t tell me is that most of their staff hadn’t shown up yet because of all the flooding and closed highways. So we turned on Northern, had to drive through one of those flooded areas, totally freaked me out, but many others were doing it and there was nowhere else to go, and 45 minutes later, we were home. I gave Maria milk via gtube, let her take a mini nap and took her to school.

Never a dull moment. And speaking of non-dull moments, Sunday, Manolis was pulling Maria toward him while she was on her tummy and I looked at her when he flipped her onto her back, and her gtube had popped out! OMG! So I ran and got a new one, gave it to him, he popped it in and we went about our business. I am so glad he was home for that! After last weekend or so when I was alone with her and her foot got caught in her wheelchair and I couldn’t recline it to release her foot for quite a while, I did not need any more drama!

And how was your day?

Stirring Up A Wheelchair ShitStorm

Tuesday, September 9th, 2014

Gotta keep the cursing headlines going, right? So after 9 months of wheelchair adjustments, replacements, additions, deletions, modifications, driving here, going there with Maria’s wheelchair, I finally hit my limit. Most people would have hit it months ago, but we all know I’m more stubborn than most!

Last weekend, I wrote a 3-page letter detailing from when Maria’s wheelchair was ordered, through all the nonsense, and finally to the recommendations we’ve recently gotten from a few neutral, but experienced, parties. I wrote it to the head of Symbius, who provided the chair; and to Dan, head of Touchstone, PT who spec’ed and ordered the chair; with a cc to our support coordinator with the state Division of Developmental Disabilities; and a cc to Blue Cross, our primary insurance company. I emailed it out late Sunday night, and early Monday morning got a call from Symbius and an email from Dan.

Symbius wants to do another (I think this would be the third?) wheelchair evaluation. They want a PT present. Neither of our PTs know enough about seating and components and brands, etc to feel comfortable in that role, so do we use the one from Touchstone, who apparently is a rep for the seating we got, which means he would surely recommend that system again? Should we go with the one we met and liked from Preferred Homecare? Should we go with one I heard of who works at one of the hospitals and is supposed to be real good at seating, but has never met Maria? I dunno. Symbius has called 3 times today trying to set something up.

So I called Blue Cross, trying to see what they think, if they have any recommendations about what to do, if they will pay for a new chair–that type of thing. I assumed my letter went into a black hole over there, but perhaps someone could give me some general advice. As I was explaining the situation, the guy said not only did he have my letter in his hand (mind you, this is about 36 hrs from when I sent it), but one of their customer care people had a bunch of notes about it and she had already called Symbius! I cannot tell you how impressed I was by that!

So then I talked with the woman who had our case file and it sounds like they are going to pay for a whole new chair for us. Of course by the time we go through all the crap to get one, Maria will probably have outgrown the one she has, but at least we have somewhat of a direction…

Thank God I can write and took good enough notes to piece together all the events of the past 9 months.