Saturday, July 01, 2006

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.


Wrkinprogress said...


My heart aches for you, facing such momentous decisions. I am so glad to know there are Patient Advocates available for you to speak with, and I really liked the answer he gave you when you asked the big question. I heartily concur, for what it's worth.

I wish I had some words of wisdom, but I don't know what to say, other than I wish you and Dear Son peace, regardless of what happens.

Much, much love,

Anonymous said...

I am a pediatric RN who just recently added your blog to my daily medical blog reading list. I am touched by your writings and hope that one day you will be able to publish your experiences in a book to reach a wider audience-- I know just how much it would help other parents who are battling the same difficult issues.

Leslie said...

Dream Mom,

Exactly two years ago, my husband and I were in that very same place with our son, Sam. Every professional agreed that it was the end; as it turned out, every professional was wrong!

Sam was born with holoprosencephaly (HPE), a severe brain malformation. Much like your Dear Son, Sam suffers from seizures which are difficult to control with medications. Sam is very complex in his needs and is medically-fragile; however, he's one tough little boy!

In late June 2004, Sam stopped breathing while sleeping just after midnight. Because we do have skilled nursing for him in our home, there was a nurse at his bedside, and she immediately responded to the situation. After calling 911 and arriving in the ED, he was placed on a ventilator (he already had a trach), and it was well over 2 hours before he took a breath over the vent settings.

By the next morning, he was stable; however, attempts to wean him from the vent were unsuccessful because he would continue to stop breathing when the vent was removed, so back on the vent he would go. All of his drug levels were checked, and they were all within normal ranges. An MRI was performed, and it showed atrophy of his brain when compared to the MRI performed just one year prior. Due to the atrophy, it was the consensus of his medical team that his brain stem was malfunctioning.

Our options were to take him home on the vent knowing that he would be on that vent for the remainder of his life, or to remove the vent knowing that his brain stem could very likely malfunction again sooner rather than later.

Our initial response was that we would take him home on the vent. There's a peace that comes when you know you've made the right decision. Because we didn't have that kind of peace following the decision, we realized that we needed to reevaluate things.

We called in our ministers, and we prayed . . . and prayed . . . and prayed some more. For me, I sat looking at the vent, and in my mind, I had to break it down to its most basic function. I realized that the ventilator is simply an electric-powered ambu bag. Rather than me being forced to stand there and squeeze that bag each and every time that Sam forgot to breathe, I had the convenience of electricity doing it for me. If I were responsible for squeezing that bag, I would see just how little breathing that he was doing on his own. It wasn't as if his lungs were going to get stronger and he would be on the vent temporarily; this was a situation where the vent would be permanent because his brain was damaged.

For me, my faith played a huge part in our ultimate decision. As I've had to do many times over the past three years, I had to remind myself that I can't breathe for Sam, and I can't control his breathing. Every breath he has ever taken has been a gift from God, and every time he has exhaled, he has expressed his gratitude and praise to the One who gives him that gift.

Finally, we reversed our previous decision, and we placed control of Sam's life into God's Hands. It was nearly unbearable to make that decision, but after the decision as made, there was peace in our hearts and souls.

Looking back, I don't know how I managed to do it but we celebrated with him in those final hours on the vent. Sam LOVES to have his hair washed, and we bathed him with joy in our hearts. There wouldn't be a future of proms, graduations and a wedding for our son, yet it felt as if we were preparing him for a joyous beginning of a new life; however, it was bittersweet, as we knew that we wouldn't be making that trip by his side. We weren't giving up on him; we were giving him up to God.

I did have a few rules for the doctor about how things would be done. I wanted to be able to select when the vent would be removed. He had to be awake, not seizing, and he had to be breathing over the rate on the vent. I wanted him to have a running start. I told the doctor that I wanted him to be removed from the vent when he was at his strongest, not when he was at his weakest.

Ativan and morphine were ordered, and the doctor asked if I wanted those to be administered before he was removed from the vent. At the time, he was happily looking around and enjoying all of his visitors. He wasn't in pain or discomfort, so I declined the two drugs in that moment; however, if I saw any pain on his part, the drugs would be given immediately upon my request. In looking back at the situation, I now realize that if I had allowed him to receive those two drugs, his respiration would have been suppressed and he very likely would have stopped breathing.

We were also asked if we wanted his feedings and routine medications discontinued. I remember my exact words which were, "Absolutely not, he still needs those!" In hindsight, I realized that discontinuing his seizure meds and holding his fluids would have created a huge problem within hours due to complications resulting from Diabetes Insipidus, which is a secondary condition to his HPE.

And, how did the story end? It hasn't! Sammy came off the vent and never missed a breath! As I'm now typing this message to you, it is July 2, 2006 . . . in the morning, we will celebrate Sammy's "re-birth day". It has been two years since that night in the PICU where we made those critical decisions.

Looking back, I do believe that my husband and I were put to the test. When it was all said and done, I believe that God was saying, "Good, you've obeyed and done what I wanted you to do. NOW, get out of MY way and let ME work here!"

By the next morning, Sam was described as "stable", and we were given the option of taking him home. Instead, we admitted him (and ultimately ourselves) into an inpatient pediatric hospice. We stayed there for a few days and realized that we were getting no rest, so we rallied our home healthcare agency and lined up Sammy's nurses again. We had spent several days holding our breath waiting for Sammy to hold his, and it was time for all of us to go home and get on with our lives.

For 30 days, we did have a DNR in place, and for those 30 days I would not leave him with a nurse unless my husband was there too. I rarely left the house because I was afraid that I wouldn't be there if he were to stop breathing, and I realized that the DNR was restricting our family from living a normal life.

After 30 days, I just mentally couldn't take it anymore, and we made him a full code again after talking with several of his physicians. Of course, we will re-evaluate that again when it's warranted, but for now, Sam is more stable than he's ever been in his entire life. That experience not only changed us, but it changed Sam in ways that I can't even explain. In that one night, my baby became a man!

I know how difficult it is to even think about these type of decisions. All I can say is that when it's time, you will know. Trust your instincts and listen with your heart. If you have peace following your decision, it was the right one. If that peace isn't there, continue to seek until you find it.

"And now these three remain: faith, hope and love. But the greatest of these is love." 1 Cor. 13:13

"Love never fails." 1 Cor. 13:8

Leslie, mom to Sam

Awesome Mom said...

Wow, you have faced some tough choices. I am glad that you were able to get the help you needed and able to feel at peace with your decision. Dear Son has a wonderful caring mother.

zoe said...

Dream Mom I am praying for you and Dear Son that God will continue to provide for you in all of your needs. God Bless You!!

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