March Madness

No, not basketball: equipment.

This month has been a giant fail for Maggie's various equipment needs. Some of that is my fault, some bad luck some design problems and some chronic failures. No matter what the reason, the problems have been annoying and inconvenient to say the least.

 On March 1, I cracked up the van which is an extremely important piece of equipment for Maggie. That was in the shop all  last week and we were car less. But they did get it back to me last Friday afternoon which was twice as fast as the other place would have had it. It was expensive to fix, but I have insurance and my outlay was limited to my deductible.  It is shiny and new looking and I'm really looking when I merge so I can keep it that way.

But the car was only the beginning. Even thought the car was back Friday, in time for Spring Break, we were only able to use it on Saturday for an outing. We haven't gone anywhere in it this week  because her wheelchair broke Sunday morning. Steve did an excellent job of stabilizing it temporarily, but it wasn't really safe enough to go in the car. Her physical therapist found some replacement tubing we could use. A repair guy from National Seating and Mobility CAME TO MY HOUSE yesterday and repaired it. That is excellent service. We can finally hit the road today.

In addition to our mobility woes, we have been dealing with Maggie's new dynavox, which arrived on March 6th and set up a few day later. The excitement of that was tapered by the glitchiness of the program and some design flaws that make it difficult to work with the wheelchair. Apparently there is a "fix" for the software problems but we just have to live with the design problems. You can imagine how pleased that makes me. I spent a week trying to get someone to acknowledge the problem - which they seem to think I was making up. I repeated the issue a dozen times saying it seems like it was not designed for someone in a wheelchair. After telling me it was my imagination and there was no problem, I hear, "Oh, this particular device  was designed for an ambulatory user". Uhhhhh. Isn't that the same thing as NOT being designed for someone in a wheelchair.  Once they "got it"  they basically said it's too bad for us. Man, for the amount of money they charge, you think they might be a bit more accommodating.

The lift system we have in the house has never worked right and while I can't attribute that to the month of March, it is another fail. I spent a few hundred bucks to fix it, and it only lasted a few weeks. I'm not sure what to do about that. I don't want to throw good money after bad, but I have to do something. It is getting more and more difficult to lift Maggie in and out of bed.

Now March is drawing to a close and the car and chair are working and we will get the software issue fixed for the dynavox and, because we don't have a choice, will learn to live with the other problems. The lift remains a conundrum, but it is on my list for April.

April is a month for Spring flowers and chirping birds.We can certainly deal with a busted lift.

Here are the lovely Spring Flowers I received last night for participating in a parent panel at UCSF. How can April not be better?

 

Multi-taskin mama

Every mother has to multi-task. In fact, I’ll bet the term was invented after watching a mom handle kids, her boss and the dog while getting dinner on the table for a dinner party. It’s exhausting to be going in so many different directions at the same time. In that respect, my life is very much like that of every other mother. It’s just that the tasks themselves are different. I can hold a feeding tube, answer the phone, suction the trach and clean out the dishwasher all at the same time. What can I say? It’s an art form.

Yesterday after Maggie’s test, I was waiting for the van to come up from the garage. UCSF has valet parking for no charge. It is a wonderful service because the design of that parking structure does not consider the amount of room one needs to unload a wheelchair. There is just enough room to get the lift down, but apparently the designers forgot that the chair actually has to come off the lift and turn. That’s difficult to do with a large vehicle parked next to you. Needless to say, I take advantage of the valet service whenever I can.
For the first time ever, they forgot us. I gave them my ticket and we were left standing there for over 20 minutes. When I asked one of the valet’s “uhhh,what’s the story with my car” he just said, “OMG, are you still here?” There is so much activity there that they just didn’t notice. I was talking to various people I recognized and wasn’t bugging them either. Maggie looks pretty helpless out there and the wind was whipping. Once they realized their mistake they felt terrible. (Maggie was fine). He sent one of the guy running to get it.

Just as the van finally pulled up I heard, “Hello Ms. McDonald, Hello Maggie” I turned to see Dr. G, her neurosurgeon, approaching us. I ran into him the other day in pre-op as well and he wanted to know how Maggie had done in the procedure. He’s a very nice guy and takes a great interest in Maggie, who he has operated on countless times. As I started filling him in the valet came around and started talking in my other ear. “I left the car running for you.” I paused from talking to the neurosurgeon and said to the valet, “No, I need the key so I can get her in the van.”

Dr. G continued speaking. I pressed the button on the key and the lift started to unfold. I explained the problems Maggie had encountered in the hospital last week. Of course my lift needs repair. It gets stuck halfway down if you don’t catch it and guide it down. This is something I do automatically. Without a break in my story, I quickly turned Maggie’s chair around, caught the lift with my foot and guided it down. The neurosurgeon just stopped and looked at me saying “wow, you’ve got a lot going on.”

I wanted to say, “Hey, it ain’t brain surgery.” It was my golden chance to say that to a brain surgeon, but I didn’t do it. The van was blocking others, and there was a cab honking. I had to load her up while I shot the cabbie a dirty look. So I just grinned at him and said “gotta go, hope we don’t see you too soon!”

So much to do, so little time.