Christopher

This has been in the works for quite a few months now, but we finally have some wheels to transport Chris!!! This is tremendously important: today, for example, Chris missed all therapy sessions because RIOSA’s contracted transport company forgot to bring wheelchair tie downs for their vehicle (wtf?!?).

I picked up the van – a 2011 Ford E-150 “E1E” / Cargo – this afternoon at Leif Johnson Ford in Austin;  Bill Seibert (photo) delivered the vehicle.  His partner, Glenn Curby, in LJF commercial/fleet sales helped us out on the chassis with Ford, and Rich Cole at MobilityWorks in Akron, Ohio, did the commercial ADA van conversion portion.

Bill Seibert with Leif Johnson Ford Fleet Sales

I’ve seen countless MobilityWorks Ford conversions driving around San Antonio, and I believe Capital Metro recently acquired some of the same units for MetroAccess in Austin.  These commercial ADA vans are MUCH cheaper than functionally-equivalent “retail” wheelchair vans.

Anyway, end of the sales pitch – I’m relieved that we have wheels for Chris.  This opens up some interesting new options for us.

Well here we are, I suppose “Chapter 5” of this very long and painful story.  Having Chris at the apartment near RIOSA has been challenging for sure, and mostly for my mom who isn’t able to escape back to work for a few days here and there like my father and I can.

The Good:

• Having Chris at the apartment during the day is fantastic;  you’re in your own environment, on your own schedule.
• Chris can go outside and get sunshine:  I’ve managed to carefully take him and our remaining beagle, Nula, on some trips around the apartment complex.
• Evaluations for outpatient PT/OT/speech therapy start at RIOSA tomorrow.  I’d guess next week we’d have a regular therapy schedule every day.
• I think – after a year of collecting part numbers at facilities – we have the required medical supplies nailed down (enteral feeding paraphernalia, condom catheters, drainage bags, briefs, wipes that work properly, etc.).

The Bad:

• The “night shift” – turning Chris every few hours through the night, handling accidents and so on – really kicks your ass the next day.
• Stupid UnitedHealth bureacracy:  they won’t approve renting an air mattress overlay to prevent bed sores until you have developed bed sores.  WTF guys?!?
• More stupid UnitedHealth bureacracy:  they won’t approve one of the more expensive medications (Armodafinil / Nuvigil) Chris was taking while at HealthSouth RIOSA.  The neurologist prescribed it on the discharge list, and even filed an insurance appeal with UnitedHealth for the drug, but they have flat out refused to fill the prescription now that we’ve switched to a different status in “the system”.  Apparently, you only need doctor-prescribed medication when you’re in a hospital setting?  WTF.
• UnitedHealth will only rent the patient lift and hospital bed for Chris out of his annual durable medical equipment (DME) budget.  That sounds like a great idea, until you realize that the first month’s equipment rental fee is actually 95% of the purchase price of the equipment in the retail market.  WTF #3, if you’ve ever wondered why healthcare costs so much more in the United States than it does in other “developed” countries*.

*See WGBH’s “FRONTLINE” Sick Around the World:

FRONTLINE: Sick Around the World

(and yeah, Chris and I were covered by German Allgemeine Ortskrankenkasse – AOK – while our family was stationed overseas…  no bullshit, it’s a better system than this nonsense in the USA)

We transferred Chris over to my folks’ nearby apartment at around 2pm this afternoon.

We have a rented nursing home-style bed and a patient lift to transfer Chris in and out of the bed.  Not sure how we’re going to do showers yet.  I think we’ve ordered the correct assortment of supplies to get started, and we picked up most of his medications at a local pharmacy this afternoon.

We’re on our own schedule now, and that’s actually kind of nice.  I’ll post another proper update later in the week with how things are working out.

Just a quick update – looks like we’ll be wheeling Chris over to the apartment in San Antonio on Saturday morning.  Hopefully the hospital bed and patient lift will be in place tomorrow (Friday).

Some more unfortunate news, but Chris is being discharged from RIOSA next week.  I was hoping he’d get into the second phase of this program, but many circumstances have again conspired against us.

Not sure where we’re going next right now, but hopefully we’ll have that sorted out ASAP.

A small bit of good news:  After talking to the neurologist last week about the small seizures Chris continued to have, he decided to up the dosage of the anti-seizure medication to the full adult dose (Chris was still on a half dose that was initiated a few months back by the neurologist in Austin).  Chris has been really alert this week in his therapies, and I haven’t seen any of the rather frequent absence seizures (small ~ 30 second episodes where he begins staring and his eye begins to roll up towards his eyebrow).  Cool.

Ahh, and my dad is still doing OK.  He’s walking with a walker, but hopefully that will improve with time.  RIOSA is discharging him on Monday (his insurance only provides two weeks of therapy).

Just a quick update:  my dad is still at RIOSA, different hallway from Chris.  He’s making slow but steady progress.  His hands still curl a bit when relaxed, but he can get them completely flat with a little effort now.  The foot-drop seems to have disappeared, and he’s picking up speed in the walker!

There’s still a ways to go before my dad will be back on the “team”, but I’m liking his progress so far.

I found Camera Mouse, a neat program from Boston College and Boston University to control a Windows Vista/7 mouse cursor by moving your head (DirectShow video stream from a webcam).  If I can get Chris to make the connection between head movement and cursor movement, that’d be pretty cool.

A quick update on my father’s surgery (cervical discectomy and fusion) this evening.  They started around 19:00 CDT, finished two hours or so later, and he’s in anesthesia recovery now waiting to transfer to the ICU (no free rooms in the step down unit).  I talked to him for 20 minutes or so before heading home for the night.  He can’t feel his right leg anymore, but hopefully that comes back in a few days.  I’m glad he’s stable and they’re keeping an eye on him overnight –  the day begins again, 0800 tomorrow, at RIOSA (my mom will go hang out with my dad at Methodist).

It’s surreal, shuffling back and forth between TWO hospitals in one night for TWO immediate family members.

One year ago tonight, Chris was in the emergency room at San Antonio’s University Hospital having a hole drilled in his skull after the accident.  A year later, our dad would be having his spine worked on from an injury sustained while transferring Chris into a standing frame at Texas NeuroRehab.

Ahh, and I almost forgot – Chris’s latest test for E. Coli now indicates new contamination of A. Baumanii, so we’re back in full isolation again at RIOSA and cannot leave the room.  We only had one more test to clear Chris of everything, and now we’re back to square one with this recurrence of A. Baumanii.  Bollocks.

Update: A bit of good news:  my dad is now at RIOSA, too (makes it a lot easier than the two hospital thing).

I spoke too soon:  Chris was cleared for A. baumanii yesterday, so he’s able to go outside the room to use the therapy gym!

E. Coli showed up in the results a few tests back, so he needs to clear one more test next week before he use the therapy gym without a protective gown.

Nothing about P. aeruginosa at all…

Awesome!