Planes, Trains, & Automobiles (or Wheelchairs)

Nathan has had a lot of excitement since May. He finally recovered from his last pneumonia and broken shoulder, although he has still not gotten back into ketosis for seizure control. He started summer school for a few weeks, and then we went to Indiana to see the Axsom family. Of course, it was quite an adventure, as everything in Nathan’s life usually is.

We chose to fly Frontier airlines to Indiana since they had the lowest fares and what we thought were the best flight times. For future reference, Zachary does not like red-eye flights. But, Nathan thoroughly enjoyed the airplane ride and especially liked the personal tv screen in front of him which flashed constant advertisements. He cooed most of the ride. But, what we expected to be the end of our rough night en route with 3 kids, ended up being just the beginning.

The airline busted Nathan’s wheelchair. Nathan’s wheelchair is more than a chair – it is his livelihood. The chair helps him to sit upright and hold his head up – two things he cannot do on his own and both critical for his health and safety, not to mention comfort. It is also his transportation. We knew that flying with his chair was a risk, but we had done it once before and really had no other choice. The most surprising part was Frontier’s complete disregard for the damage they did to his chair including an attempt to “cover-up” the damage. The story gets even more disheartening as the Frontier manager in charge at Indianapolis shrugged us off – telling us to leave our info with an associate because she had many other customers that she had to attend to. The best response we could get was that we had to leave the chair at Indianapolis and they would call us when they weren’t so busy. Yet there was no commitment to fix it, pay for fixing it, or acceptance of accountability for the chair. They also broke the handles off of Zachary’s stroller and told us that stroller damage would not be covered. It is now 4 weeks later and we still do not have it resolved with Frontier although we did get it “functionally” repaired the week after we returned.

I won’t bore you with the details of our next several days of logistics, other than to give a positive plug for an amazing rehab equipment company in Ft. Wayne, IN. Hamilton HAS went above and beyond in customizing a “demo” wheelchair (Kidcart) for Nathan’s use for the week. They did all this for a nominal labor fee since we did not know if Frontier was going to cover our costs. Midwestern hospitality was at its finest with these genuine people who really cared about the child and not the money. The chair was not ideal for Nathan’s needs, but it was an acceptable stand in – and certainly better than we expected given our situation.

Unfortunately, the next day Nathan’s feeding pump malfunctioned. This is his life support. He cannot eat through his feeding tube without a feeding pump and therefore this problem is classified as an emergency (at least in my book). It is too bad that Apria employees in the Midwest do not have that same Midwestern hospitality as the wheelchair company. They give the same shoddy customer service they give in California. Again, I won’t bore you with the details - after 10 hours of phone calls we did finally get a replacement pump (with a bad battery back-up). We chalk this up to more of Nathan’s (and my) daily trials and tribulations.

So, on with our vacation (vacation, yeah right). We did manage to have a nice time visiting friends and family. It thunder stormed just about everyday that we were there, so some of our plans did not pan out. But we did get to spend a lot of time with my sister (Auntie Glo), brother-in-law, and parents which was the real purpose of the trip anyway. The kids all enjoyed real Midwestern thunderstorms (and lawn mowers). We visited a very cool science museum one day and enjoyed a few down home “cook-outs”. Nathan stayed healthy which was our biggest wish, even though he missed his creature comforts of home and his nurses. The trip ended successfully with an uneventful return flight and with Nathan ecstatic to see Sandy, his nurse, again. He cooed for hours once reunited.

Well, since it has taken me so long to write this update, I will wait to post an entry with the highlights of our July trip to Disneyland & the beach at a later time. Oh, and if you have not already, check out Jim's entry below about his whirlwind getaway with brother-in-law Kevin during our Indiana visit.

Love, the McCues