Advance Directives-Part I: The Incredible Life of Paris Hilton

This is a three part series that chronicle the discussion surrounding Advance Directives, that took place earlier this month during Dear Son’s most recent admission to Big Academic Medical Center. I wrote Part I during the admission.

Sometimes, I just wish I could be Paris Hilton for a day. It’s not that I think she is the most beautiful woman on the planet or that I necessarily even like her. I just know that I’d like to be her, for one day. One day to go shopping, massages, get my nails done, go to dinner and then go to a fabulous party with lots of gorgeous people and just have some fun. I need one whole day of nothing but fun.

Instead, I’ve just dodged another bullet. It appears Dear Son will recover and thankfully they didn’t have to vent him. While the primary diagnosis is “aspiration pneumonia”, they really suspect it was another MRSA pneumonia however they only way they would know for sure is to get a culture, and they will not be doing that this time.

It was Saturday morning and we had been here for since Wednesday. I came down with a horrible sore throat yesterday morning and was sick as a dog. I know it’s just stress but that doesn’t make me feel any better. I am never sick. To be quite honest, I felt miserable and sleeping on this hospital bench just wasn’t cutting it. I could hardly stand up let alone keep my eyes open. I needed to make sure I didn’t breathe or get near Dear Son. I just wanted to go home but can’t leave Dear Son alone. It’s not that they won’t take good care of him, it’s just something I never do.

I was thankful he’s recovering and a little worn out from the second admission in less than one month. I’ve spent Mother’s Day and Father’s Day here. In the last month, we went from death’s door to the gymnasium door for graduation and back to the hospital. It was all going to be resolved and it was going to end. We could go back home in a few days and resume our lives and see the kitty. I would be a good Mom and let go of my idea of wanting to cook for my son and instead switch to 100% g tube feeds with Pedia Sure for the rest of his life. It was a done deal. Until the PICU Attending Doc came into the room.

Our conversation started rather casually and quickly got deeper. She moved from a standing position to sitting on the couch to begin to talk about the next steps. You know you are in trouble when that happens. They don’t come in to sit. That means they are going to tell you something that you don’t want to hear and something that they have to tell you. Standing is good, sitting is bad. Just some little things I’ve learned after all of these years.

I thought I was way ahead of her; that she was going to talk to me about directives. But I was wrong. Sort of.

No, the conversation started with the fact that while they couldn’t be certain it was a MRSA pneumonia, they decided to treat it as such just in case. Then she moved on tell me that if Dear Son can’t manage his secretions that this scenario could repeat itself again and again and we could be here every month. If that should happen, then we may need to consider a trach so I could suction the secretions to keep him from getting a pneumonia. Suction him to keep him from getting a pneumonia and to keep them from having to vent him again and again, suction him to keep him living.

Then there is Palliative Care that I can speak with. And then of course, they could also just give him some oxygen and make him “comfortable”. I have to admit, I was a bit blindsided by the conversation. She was asking me to make some choices. I assumed I needed to make them now and I just wasn’t ready.

I sat there thankful and grateful for her honesty and preparing me for the fact that this was never going to end. Inside, it gets really hard. I slip into a deep depression, wondering how on earth I can ever live without Dear Son and feeling my options closing in on me. The choices get worse, kind of like trying to decide which thing you are going to eat on Fear Factor. There are no good options. My mind quickly shifts to self pity: What did I do to deserve this life? What did Dear Son do? What does Paris Hilton do? I want what she’s having.