Thursday, June 29, 2006

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.


Surgeon in my dreams said...

Hugs to you DM. I'm praying for DS and, for your comfort and peace and wisdom and courage. I wish I could do something more tangible.

Wrkinprogress said...

There is no way to respond to this post other than to say that I love you and wish I could help.


Anonymous said...

Nothing that can be said can ease the pain and difficulty that you and DS are having. However, you are admired as an intelligent, caring and "rare gem" of a Mom. God doesn't call the prepared, he prepares the called. You are a special and wonderful woman, and I have never met you. I do, however, admire you from afar. God Bless you and DS.

Ex Utero said...

I have been reading and waiting, wondering when this particular post would come. How you would write it. How you would put it into words that were compelling yet real and down to earth, like you always do.

I'm sorry. I've probably been on the other end of that conversation thirty times as a doctor and you can't help but wonder what it feels like on the other end. What you would want someone to say to you. How you would want it to be said.

I'm sorry for Dear Son, although I know he doesn't realize what you now realize. Just because the choices are getting harder, it doesn't mean that the end is here yet. You just know that it's coming. Like it is for all of us, we just don't have somebody telling us the damned details. I hate being the one who has to do that and I feel for the doctor who sat on those steps and had to play that part as well.

I hope you get a Paris Hilton Day. Thinking along that line, perhaps now might be a good time for Dear Son to apply to the Make a Wish Foundation? The two of you might be able to do something together.

Ex Utero

Cathy said...

Dream Mom, I can only echo what WIP has said. I love you and dear son. I'm very sorry for what you have been through and what they are now asking of you. I wish I could give you a Paris Hilton day. You deserve it more than she.

Danielle said...

Dream Mom- I cannot imagine. I really try--really, really hard--but I cannot put myself in your shoes. I don't want to say "I don't know how you do it!" Because I know you just do. Your love for Dear Son is palpable.

That Girl said...

You are living my worst nightmare. If there's any way I can help, please let me know. Little or big.
My thoughts are with you.
I too sometimes wish to be frivlous. I also think the main appeal of being someone obviously frivolous is that they are so completely ignorant of even FACING choices like this. Ignorance can truly be bliss.

Dream Mom said...

To all of you-Your support is wonderful, today and always. Your help is just by listening and by doing small things in your own lives that help make life easier for children with disabilities, children like Dear Son. I am always amazed at the wisdom in your comments and I appreciate you taking the time to write them.

Anonymous 108-That was a beautiful and touching comment. I don't know if I feel like I have been called, but you certainly made me feel quite special with your heartfelt comment and wisdom. It is always nice to know that I am admired, even if I don't know you personally. Thank you for the blessing.

ExUtero-I am certain that the conversation has to be difficult regardless of which end a person sits on. I believe the best doctors truly want the best for their patients and I am sure you are no different. Perhaps I'll write a Part III talking about what I need to hear in these conversations. I think it would also be interesting to hear from physicians on what goes through their minds when you have these conversations. That is the fascinating part about blogging-getting to hear the other side.

That Girl-I think we all would like to be frivolous some days. I am sure Paris has her days too and I don't see anything wrong with having some fun while she is young and beautiful. On the flip side, certainly there are a lot of other people who are going through worse things than I am at this time. It just seems that over the last few years, I have been consumed by this lifestyle.

Danielle-I already know about your capacity to put yourself in someone else's shoes. You have wisdom far beyond your years.

WIP-To the kindest and most loving person I know. All of us bloggers are lucky to have you as their friend.

Thank you all.

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