Advance Directives-Part II: It was just my imagination, running away with me…

This is the second of a three part series that chronicle the discussion surrounding Advance Directives, that took place in June during Dear Son’s most recent admission to Big Academic Medical Center for a second “suspected” MRSA pneumonia hospitalization in less than one month.

The discussion caught me off guard. I had thought a lot about directives in the last nine months but could never bring myself to taking action of any kind. I prayed for the chicken’s way out, that the Lord would take Dear Son when his time was up and that I wouldn’t have to make any decisions. I just can’t imagine that I could actually issue any directives, directives to take away my Dear Son forever. No, I just can’t imagine that. What mother could do that? Not this one.

After our conversation, I continued to get sicker. I was already feeling horrible and the discussion only added to my misery. Everyone around me kept asking me if I was glad that this hospitalization was going much better than the last one, but they just didn’t know. On the surface, yes, Dear Son wasn’t vented, but behind the scenes, well, that was definitely worse. I barely had time to go through last month’s medical bills, the total billed charges which were close to $200,000. All of which would be paid, no doubt, after discounts, but still, it was a big number. And a lot of paperwork for me to boot, paperwork that was piling up on my desk at home. This admission would be another ten days and I refused to calculate the numbers. No, I couldn’t let the numbers enter in the equation, but I can’t ignore them either. I can’t have a $200,000 hospitalization every month.

I begin to go through the scenarios twenty four hours a day. No, I can’t imagine coming here again. No, I can’t imagine living through another vent admission with Dear Son. I can’t imagine seeing my son lying like a corpse on a hospital bed, lifeless, with tubes and needles in every possible part of his body while his body slowly shuts down. No, I can’t imagine ever putting a trach in him. Not only do I have a weak stomach but I can’t begin to imagine the conversation that I would have with Dear Son telling him why we had to cut a whole in his throat while looking him in the eye. After all he’s been through, it wasn’t going to happen. So then, there was the big one. Was I going to put a Do Not Resusitate (DNR) in place? That’s what she wanted to know.

I tried to imagine exactly what that meant. Not in the literal sense, but just how that might play out. I tried to imagine coming to the Emergency Room, with Dear Son breathing fast and hard, having another MRSA pneumonia, and then at some point them asking me or I tell them that he has a DNR in place. The ER fills up fast, as it always does and somehow, in the midst of all the people, Dear Son has trouble breathing, looks me in the eye to help him and someone yells out in the Emergency Room that he has a DNR and not to help him. Dear Son hears this, looks at me, gasps for his last breaths and dies looking me in the eye and knowing that his mother didn’t help him. That’s the image that would replay in my mind over the next six days until I could get some answers. I couldn’t stop thinking about it. I realize that it might seem like an odd scenario, but if you’ve ever been in an ER, things tend to get really crazy, when it gets that busy. It’s not like I can go on-line and order a book right now.

I can think of nothing else over the next few days. It’s like a giant elephant is sitting on me and as much as I try not to think about it, as soon as I open my eyes, I see the giant elephant again. It just won’t go away.

I call the secondary insurance nurse and speak with her briefly. I ask her if she has someone I can speak to about this. She calls me back and arranges for me to speak with someone from a hospice organization. The nurse has been talking to me about hospice for over a year now but I am just not ready. It’s kind of like going casket shopping when you have stage four cancer-you know you need one but you don’t look forward to shopping. I take her phone number and decide to call her once I get out. I really need to speak to someone face to face, someone that knows me. I mean, how do you ask someone over the phone to describe in graphic detail, just how someone dies? What I really want to know is about the pain and suffering. Is Dear Son going to be in pain? I can’t live with that.

Next, I decide to have a conversation with the Family Advocate. The Family Advocate at Big Academic Medical Center is a man who I have spoken with on many occasions and who I can trust. I know he has just written a book on this topic and has been searching for a literary agent. I e-mailed him a few months back to see if he had found a publisher and to see how things were going with his book deal. He has his Master’s in Social Work and should be a good source of information. We arrange a meeting for later in the week.

In the interim, I run into the former Attending Doc from last month’s MRSA pneumonia. She’s the one who recommended the blood transfusion and who saved Dear Son’s life. She’s also the one who brought flowers for all of the mothers in the PICU on Mother’s Day when I thought Dear Son was going to die. How could I ever forget this woman?

She runs into me getting on the elevator and asks why I am here. After playing some catch up, I ask tell her about the conversation and ask her for specifics. I want to know, what exactly happens when they die. How does death happen? Are they in pain? Is he gasping? What? She explains that they can give him oxygen and morphine for the pain. I want to know how much oxygen and what kind. Are we talking a nasal cannula, Bi-PAP machine or what? What is the cut off? We talk a bit more and then she gives me some additional information. I learn that the Attending Doc who spoke with me also sits on a Pediatric Medical Ethics Committee. I tell her I will probably speak with her again once I get some additional information. I make sure to thank her again for the flowers and tell her how much it meant to me that she thought of me on Mother’s Day, when I thought my son was going to die. I’ll never forget that moment when he was so close to death and then she brought in the flowers, it was like the sky just opened up and things were going to be all right.

I finally meet with the Family Advocate, some six days after the conversation with the PICU Attending. He walks me through a lot of things, namely the death. He tells me how long the DNR is for, how it is negated and some other things. He also tells me what to say. Apparently, when they are at the end they go through a stage where they are uncomfortable and begin to panic, then you need to ask for something to make them “comfortable” and not for “morphine”. The part about them being uncomfortable and panicking made me uneasy. I ask him the big question, “How do you know when it’s time?” He says, “It’s time when they don’t get any more pleasure out of life.” “Dear Son is not there yet.”

I leave the room, relieved, relieved he has answered a lot of questions for me. I thank him for his help. I can sleep now that I have some answers.

I think long and hard over the next few days. In the past two years, Dear Son has lost his ability to walk, his ability to sit and most recently his ability to eat anything by mouth. He has two things left, he can still process his food and he is happy. I never imagined in my wildest dreams that life would boil down to this. I just can’t imagine ever living without seeing that smiling face every day. But it’s not just about me anymore.

I decide over the next few days that I just can’t put a DNR in place at all. I just can’t live with myself. I need to help Dear Son as much as possible. The only decision that I allow myself to make is that if he gets this pneumonia again, that I’ll wait until the physician tells me it’s time, that he won’t make a recovery and then I’ll worry about it then and decide what is best. That’s all I can do. In the meantime, I pray. I pray that I will never have to make these decisions. Sometimes, we are too smart for our own good. We can save nearly anyone and yet in the beginning people have to “choose” life and in the end, we have to “choose” death. I don’t get it. Oh yes, we are sophisticated all right.