New Year, New You!

It’s about this time every year that you can’t open a newspaper or go to an internet site without tips about how to keep those New Year’s Resolutions. I, for one, was always big on New Year’s Resolutions, writing them down, and then checking them off again a year later, to see what percentage I completed. Over the years, I simplified them and finally broke them down into very measurable results along with monthly, weekly and daily tasks to meet my goal.

It’s also interesting to see how resolutions have revolved. Twenty years ago, a common New Year’s Resolution was to quit smoking; a common one today is to get more organized. I remember last year on Good Morning America, they were comparing New Year’s Resolutions. Robin Roberts' resolution was to get more organized, I think Diane Sawyer’s was to lose weight but most interesting was Charles Gibson resolution, to read more, as if he didn’t read enough already.

My New Year’s Resolution’s used to entail a very detailed Account Plan for my life. As a Senior Account Manager, I was required to have an Account Plan for each client. I decided I should write one for my own life, and had it all mapped out. As Dear Son’s illness progressed and his health worsened, it fell by the wayside. Not because I didn’t want these things but mainly because without the income of a full time job, many of the things I wanted to do both professionally and personally, were no longer attainable.

And that brings me to Dear Son. What on earth would his resolutions be? What are your resolutions when you aren’t able to do anything? Let’s see….no use of your arms, or your hands, you can’t walk, you can’t weight bear, you can’t roll over, you can’t eat food, you can’t operate a remote control and you are totally reliant on your mother or someone for your entire existence. Somehow, the thought of improving himself, is nothing more than a pipe dream. What do you do when it won’t and can’t get any better? What do you hope for?

I hope for many things for him. I was looking on Big Academic Medical Center’s website over the weekend for the press release on the new emergency room. In particular, I was excited because this new emergency room would have a place to change a teenager’s diaper. That’s what I was excited about. I had spoken with the Family Advocate many times over the last few years about things that were needed there. One of them was “medium” diapers. They only had large and small diapers for many years. If you weren’t a small, they gave you large which were so huge that all of the urine and stool leaked from them requiring multiple bed changes, plenty of nursing and aide staff, lots of sheets and changing pads. I explained multiple times how from an operations perspective this was a huge loss of time and money. It took over two years but he secured medium diapers for all of the pediatric patients.

The second thing I talked to him about a place to change Dear Son when I went to the ER or when I went for a pediatric office visit. I had been on an office visit at Big Academic Medical Center in December, and then had some labs done for Dear Son. During that time, he went to the bathroom and required changing. (At 150 pounds, Dear Son is too heavy for me to lie on the bathroom floor not because I can’t get him down there, but rather, I can’t pick him up. And that’s without discussing privacy issues or the fact that a teenage boy is in a woman’s restroom.) But while I was there, I asked to use one of the patient rooms to change him. Everyone was too busy and no one had one I could use. I was getting a little bit angry that here I was at a Level One trauma center and one of the best hospitals in the country and I couldn’t find one room in the entire facility where I could change his diaper. No one had any rooms “available” for me to change him. Dear Son’s total medical charges were in excess of $300k (before discounts) this year and yet, they don’t have a place for me to change him?

I had spoken with the Family Advocate many times on this issue and apparently, I wasn’t the only one who needed this. He assured me that one of the new features of the ER would be a place to change kids like Dear Son, who could not use the handicapped bathroom and who are too heavy to change on the bathroom floor. I have written many times in this blog on how I can not lift Dear Son on a bathroom floor and put him back in the wheelchair. The new ER will have just the place for him. I can’t wait to take a tour and see it.

I continued on through the press release where it said it was a “state of the art facility”. I wonder what exactly that means, from a patient perspective. Maybe it means that all children, regardless of their abilities, will have access to a washroom. Now if we can only get a place to change them in all pediatric medical facilities around the country, we would have it made, or at least, we’d be off to a great start. Now that’s a New Year’s Resolution, I’d like to see. Not one that changed life for one person, but one that changed things for a nation. Now that’s a legacy anyone could be proud of. Cheers!