All things bright and beautiful

This has been a rough week. It has also been an amazing week.

It has been a week that has shown me how the life can be so full of love and within that love come such loss and heartbreak.

In my line of work, I say many times throughout the year, "My patient died." It's part of the weekly, sometimes daily routine of a palliative care physician. To some extent, all of the deaths affect me. Maybe not because I knew the person or their family, or felt sadness or loss from their death, but because in any death I am always reminded of the fragility and splendor in which we exist.

This week, though, I was hardly able to say the words out loud, "my patient died" in speaking about one of them. She was not just a patient. She and her family had come into a place in my heart that only a handful of patients and families have ever been allowed. They inspired me with every interaction I had, and although my medical mind knew the reality of what would eventually happen, I found myself, like them, believing that if anyone was going to have a miraculous healing and beat the odds and live a long, full life, it would be her. We had watched her survive episodes of critical illness that would kill or physically devastate most patients, but weeks after coming through one of these episodes, she was off to DisneyWorld for two weeks with her family, including her young daughter - riding rides, swimming, living life as if there were no illness waiting to overtake. She amazed us.

So when she came back to the hospital days after getting home, critically ill, we all hoped it was another of those episodes. The news wasn't as good this time, though, and when she was able to get to a point where she could get off of life support machines and get home with her family, forces rallied around her to get her home to be with her family. I sat with her before she left the hospital, we held hands, we talked about our hopes, and that even if God's plan for her was not to watch her daughter grow up, that I knew she would still be with her every single day of her life. We both had a few tears. Her family joined our visit, I answered a few logistical questions, and eventually I needed to go - but not after several hugs and a look into my patient's, my friend's eyes, telling her I would think of her every day.

I knew medically that her time at home would likely be short, and my hope was that it would be calm, comfortable, and another chance for her to be a mom, a wife, a daughter if even just for a few days.

From her family, we heard she had just that, for one whole day of being with them at home, before she died in her sleep overnight.

It's one of the rare times, perhaps really the first time I have felt this deeply, "I don't know if I can do this." I don't know how often or how many times in my career I will ever be able to bring someone in this close before it ravages all of my emotional reserve. On the other side of that thought though, is the knowledge that whether or not to let someone in so close is beyond my control, and there are simply going to be people I meet as patients that come to that place in my heart, and as broken as a piece of my heart is left, it also leaves me knowing that this is my place in life, my calling, and is a humbling gift.

This gift was revealed this week in my own life as I spent an evening putting up the Christmas tree with my boys. This is much later in the year that we normally put up the tree, but I wanted it to be something all four of us were able to do together, and I waited. In past years I have waited everyone had gone to bed, or I had a half day off home by myself and I have decorated the tree just so, making sure the styles and sizes and colors of ornaments were evenly distributed. If Henry offered to help I would give him a few ornaments that he could place himself, and if they didn't end up in the right place I would either make him move them or would later relocate them myself. It's a habit I picked up from my mom (sorry mom), and I always remember those red and white checked ornaments that would always end up needing to be moved so we didn't have too many of them too close together. 

This year, Henry showed a new and enthusiastic interest in decorating the tree, and so before we started opening the ornament box, I thought to myself, "just let this happen." And it was so much fun. Henry is old enough now that he remembers acquiring some of our ornaments, he knows he was with me when we picked out some of them at the store, he knows which are his "birthday ornaments" and which are Leo's. He would pull some of them out of the box and marvel at the colors or the details. And he had certain places he wanted them to go, places I would not have chosen aesthetically, but that to him, made sense. Some of the locations were chosen because they made a story or theme together. He put his birthday ornament, and his "H" ornament, and two other of his favorites together near the bottom of the tree. He hung several jingle bells around the bottom like a fringe. He told Leo stories about some of them. We had a fire in the fireplace. The boys drank hot chocolate. For a little while, Tom played the guitar and we made up songs and then Leo started shouting "Jing-Go Bells! Jing-Go Bells!" over and over while he very seriously shook his jingle bells.

And as if that isn't all enough, somewhere in the midst of all this, Henry put his arms around my waist and said, "Thank you, mommy. Thank you for doing this tonight."

I type this now and am both somewhat embarrassed of the overwhelming perfection we had for a couple of hours in our house, and am also wiping tears and snot off my face as I sit here crying. 

It is one of the best nights our family has had. No yelling, no fussing, no bickering. I know that Tom and I, and Henry, will always remember that night. It makes me so happy that Henry has that in his mind now and I hope that if and when he is a father, and while he puts up a tree wit his family, he thinks back to our night when he was six years old. I hope that Leo, though he won't keep details of it, will look at an ornament that I make him take for his own tree, and for some reason feel warm and happy when he looks at it.

And for this night, I have to thank my patient. If it weren't for her allowing me into her life and to be a part of her journey, I don't know that I would have let myself and my family have our evening. I might have forged ahead and put up the tree at midnight one night when I was too wired to sleep, or have fussed at the kids or rushed them along, or been irritated when Tom started playing his guitar. Instead, my heart was more open to my family and to valuing the time together rather than rushing through it. I didn't even try to make it perfect - which has never worked in the past anyway. I just wanted us to be together, to slow down, and to enjoy. Without her, I might have forgotten about the importance of taking life one day at a time, and loving those we have in our lives more than we love all of the other stuff that distracts us from them.

So, when people tell me, "I don't know how you do your job," or when less kind people say that I do this work because I somehow "like" death, this story is my answer. I can do what I do because what I get from it is an embarrassment of riches. And I do not "like" death, instead, I love life. Death is a fact in this life, and finding the ways to help others live to their best in turn reminds me to do this myself.

In the spirit of this season, my wish is for love and peace in the hearts of my family and friends, for moments here and there that bring you awe and remind you of the fullness of your lives. And for all those I am grateful enough to know as my patients, I say, again, "thank you."

I have been evicted...

photo credit http://philip.greenspun.com

We recently had a very dear patient at the Hospice House. One of those old men you look at and still see the charm of his boyhood, twinkling eyes and affection right there on the surface.
He had been an artist, but as he became more ill he was no longer able to hold his pens and lost one of his great joys. In his last month, he wrote this poem:

I Have been Evicted

   Evicted from My House

The House of Life

The House I Loved so much

For so long and forever will.

Lately it has been going down

  The Shell is breaking

The Structure is cracking

   showing its Age!

I Have been Evicted

  From My House of Life!

The landlord sent me Notice

Friendly but Unmistakable

   Time has been set.

Bring Your House in Order.

   You have to Leave.

Take your Memory with you

   And take Solace

It has been a lovely comfortable House

   But time is Up.

See you all at the new Place

  "The Heavenly Chit Chat"

-JB 5/29/2011

By the time I met him, his house was quite decrepit and plans to move out were well underway. He was still there, though, that boyish twinkle. And so very kind and sweet and always trying to lighten the mood and elicit a laugh. He found comfort in having someone just sit with him and hold his hand. Often he would bring the guest's hand to his lips for a gentle kiss.
From what I was able to learn about him from his friends and his medical records, he had every reason not to be sweet and kind. He had reasons to be bitter, angry, dysfunctional. Instead of choosing to rail against the world that had done him wrong, though, he chose to find beauty and joy in it. Even in the small details of flowers on his table, or birds and squirrels in his yard.
The room he was in will always be his room in my mind, the room where the final eviction occurred, and he set off to "The Heavenly Chit Chat."

So Long, Farewell.

Leaving work at the end of the day can be a very strange experience when you work with the dying. You never know if you are saying a casual, friendly "goodbye" or THE "goodbye." The one that means forever. It can put a lot of pressure on what is usually a pretty simple part of daily conversation.
Usually, when there is a chance the patient won't still be alive in the morning,  they aren't in a state to really seem to care if I am in their room at the end of the workday, much less what I say to them as I leave it. If the patient is able to tell me goodbye, chances are, I'll see him in the morning.  Then one day a patient told me goodbye, and I was pretty sure there was a good chance that he actually wouldn't  still be my patient the next day.
I had this feeling because, as I left his room, telling him I hoped his night went better than last night (he'd been anxious and had trouble sleeping and became fairly confused as the night went on by the time of my visit, his thinking was quite clear). He glanced toward me, where I was standing by his door, and stated, plainly, "Oh, I think it will be better. I'm probably going to die tonight, so I doubt I'll see you in the morning."
He didn't say it with drama, or as if he were waiting for some kind of "oh, don't be silly, you're going to be fine" response. He said it as if it were fact. Simple, known, fact.
The sky is blue.
I will die tonight.
You will not see me tomorrow.
It caught me off guard, and made me smile toward this sweet, gently man, who had often said things like, "this isn't living, this is existing" and "I never thought it would end this way for me."
He had become so sad by the fact that he couldn't just will himself to die and that it actually was taking his physical body so long to shut down and release him, that I truly hoped he was right. It was as if this were his last remaining wish, to simply die. To die before he could feel himself growing any weaker, any less vital, less mentally sharp.
The perfect ending to this story would be that I walked into work the next day and was told that the patient had died. That he had fallen asleep peacefully, with his wife at his bedside sleeping on the pull out bed in the room, and that, as they held hands, he had calmly and peacefully taken is last breath.
I'd almost convinced myself that this would be the actual ending.
So when I walked into work the next day, and saw that he was still alive, I felt sad. I wanted the perfect ending, the poetic outcome.
Instead, there were six more days and nights that this man existed through (he definitely wouldn't have liked it to be called "living"). He hardly had the energy to speak, and for his final few days was in a state of being unresponsive to his family. His lovely wife, to whom he had been married for over 50 years, was there with him the whole time. The morning before he died, I walked into his room and she was sitting next to him, holding his hand, crying quietly. His time was clearly drawing close, as was their life together.
Finally, later that afternoon, he did die. His wife and son were there with him. It wasn't the perfect ending he'd wanted, but he was comfortable and peaceful and surrounded by love. And I was happy for him to finally get what he'd wanted.

There but for...

Tonight is my (hopefully) last ever 30-hour in-hospital call. It's strange to think that another phase of my training is drawing to a close and that I'm on the brink of being allowed to practice medicine all on my own. The day started off with the usual parade of inpatient tasks: checking in on patients, reviewing lab results and x-rays, rounding with the attending, note writing. It was a calm day. I was in our resident lounge studying, in fact, and had just dozed off on the comfy sofa when my pager went off.
"Of course," I said, maybe just in my head, maybe out loud. I called back the number and that's when things got a little crazy. Sit tight with me for this story, see, I'm still processing what went on and actually thought sitting down to write about it might help me in some way.
So, I returned the call and was made aware that there was a potentially very sick pediatric patient in the emergency room. The call actually came from a nurse in our pediatric ICU, who was checking with me to get more information about a patient they had heard might be getting admitted to the unit. At that point, I actually hadn't heard anything, but told her I'd look into it by calling the ER.
When the clerk answered the phone in the ER and I identified myself as the pediatric resident on call, she laid out a story: a toddler had been brought in by his parents and he had been immediately put in a room and there was a chance he was going to be intubated and possibly coded, and the ER docs thought maybe he had perforated his bowel. She told me he might be going to the operating room, that the surgeons had been notified.
I called back the ICU and gave them the info, then told them I was going to go to the ER myself to see what was happening.
Walking into the 25+ room/bed emergency department, there was no question as to which of the rooms the toddler was in. There was a crowd of people at the door, a flurry of activity coming in and out of the room. I found another resident, who was working in the ER, and she told me a quick story about the patient. By the time I got to his room, he had been intubated and because they had a very difficult time getting IV access on him, they'd had to place IO lines (IO = intraosseous, something we can do for kids where we put a pretty big needle into the bone in the lower leg so we can give vital medications, fluids, etc). An x-ray was being taken to see of the breathing tube was properly positioned, to try and see if there was a problem in the abdominal cavity, and to see if both of his lungs were inflated. The x-ray showed that he'd possibly had one of his lungs collapse, so the ER doctors and surgery resident prepared to place a tube in his chest to evacuate the air. During this time, the boy's heart began to slow down to a rate that requires us to start chest compressions. We were officially in a full blown code blue.
What happened for the next 25 minutes was a demonstration of what physicians and nurses do to work together to save lives. For a few moments every now and then the room would get a little more tense and on edge, but for the most part what I saw happen was a coordinated effort to bring this boy back from the brink, rescue him from death.
Breath was pumped into his lungs, three of us alternated turns to compress his chest to try and pump his heart for him so blood could flow through his body, needles were stuck into his belly, his chest to suck out air that shouldn't be there and might be compressing vital organs, time was watched to let us know when doses of medications could be given, and all the while the boy was motionless on the bed.
At about the midpoint of the efforts the parents were brought into the room. They saw their boy, they saw a room full of doctors and nurses working to save him. They were too upset to stay in the room, and stepped just outside into the hallway, mom sobbing, dad crying.
There was a moment when his heart began beating again. It showed up on the screen, a flicker of activity, a steady rhythm but not the kind that can actually keep someone alive - but just enough that we felt a weak pulse. A shock of electricity was delivered in the hope that it would "reset" the electrical system of the heart so it would beat properly and strongly on its own. For a minute or two, it did, We could take a break from the chest compressions, but several of us had our eyes on that monitor, watching the heart rhythm to make sure it behaved.
Of course, it didn't.
We went back to compressing the chest. More medications were given. More needles placed. I'm sure more prayers or requests for divine intervention were made.
It gets to a point, though, where everyone in the room starts making eye contact with one another. We all begin glancing around, then glancing back up at the clock. In our minds, thinking, "It's been ___ minutes since we started compressions." We start doing the calculations. Start remembering the basic science. "Brain damage sets in after only 3-4 minutes without fresh oxygen." "Chances of meaningful recovery after severe anoxic brain injury are less than 1%." We know. We don't want to know, but we know. We don't want it to be true.
But, it is. It's enough. We've gotten to the point where we say, "this is all we can do."  It's enough. But when it's a child, the words "we've done enough" seem inadequate. When a child was playing happily this morning and suddenly fell sick this afternoon, and now we are looking at his little body in front of us, how can we feel that we've done enough?
Through the past four years of training, I have seen plenty of patients die. I have been a part of several code blue situations. I have stuck needles and tubes in people. I have done chest compressions. I have squeezed oxygen into their lungs. I have seen most of those people ultimately pronounced dead - either pronounced dead for the cessation of the code, or dying hours to days later after having been hooked up to life support following the resuscitation efforts. Some of those codes and ultimately those deaths came expectedly. Death creeping up, closer and closer, all of us doctors knowing the end was near, unable to convince the patient or the family that a code would fail. Then when the page comes "Code Blue, room ___," we look at our pagers and think, "Of course." Some codes are expected because of a person's age. Are we really that surprised when a 96 year old's heart stops beating? Is it that shocking when a patient with cancer affecting every part of their body succumbs to infection or organ failure?
What I've never done, though, is gone through a code on a child and seen that child die.
I've been a part of a small handful of pediatric code blues. Fortunately, they rarely happen. There are the resuscitations we do one our patients in the neonatal ICU, those babies born 4 months early, who come into the world needing us to basically replace what their mother's womb was doing for them. Those still fall into that "not surprising" category, though. Just like it isn't surprising when a 96 year old heart stops, so it isn't surprising when a 25 week preemie's lungs aren't working.
I've seen a couple of toddlers come in with near drownings, but they ended up getting intubated and going home, seemingly unscathed, within a week each - although I have to say at least one of those kids shocked the heck out of me to have done so well.
This boy, though, was an out of the blue, totally unpredictable, tragic story. He was a healthy toddler. He was a little under the weather yesterday, threw up a few times. Was drinking Pedialyte okay today.
Then, mom and dad noticed he didn't look right. Noticed his belly seemed to be "getting bigger and bigger" then his breathing started getting fast and shallow and he stopped acting alert. They were driving to the hospital as fast as they could, carried their little boy in, handed him over to the team in the ER.
The ER doctors and nurses, the pediatricians, the surgeons all convened on the room, on the boy.
Help him.
Fix him.
Save him.
We tried.
In the end, it wasn't enough. When we say, "that's enough," we know it isn't the "enough" that got the job done.  The enough of "let him go." The enough of "now we need to leave this body alone."
It's the enough of mercy.
We decide we have reached that point. We ask the family to come back in, we keep working. We keep watching the monitors, keep squeezing air into his lungs, keep putting medications into his body. Tonight, I was the one to keep compressing his chest to keep the blood flowing.
The parents come in.
The boy is very sick. He was very sick when you brought him here. You did all you could do. we've done everything we can do. The body has been though a lot. We have been doing all we can do for all this time, are still doing all we can do. We recommend that we stop. We are telling you, "your son is dead."
All that time, while the parents were standing in the room, hearing this news, being told their child's fate was decided, I was pushing on that boys chest. I found myself pushing harder, pushing with all my energy, as if I could elicit the right charge from my body to travel down my arms, into my hands, through his chest and into his heart. Start again, This is your last chance, dammit, if you don't start beating again for us now then you're done. Please, start beating, something. Now...please. Hurry. This is it...
I noticed my vigor increasing, became momentarily singularly focused on trying to get that damn heart to beat again. Then I noticed the hands of the other doctor's and nurses slowing down, drawing back from the boy. Stop the medications. Stop bagging in the oxygen.
Stop compressions.
That's it.
A moment ago, we were keeping you alive. Or at least, "alive."
Now you are dead.
He is dead.
Your son is dead.
Slowly the room cleared out. You don't realize how crowded the room was until people start leaving it.
We removed what we could of medical equipment from his body. Wrapped him in blankets, asked mom and dad if they would like to hold their son.
Mom gathered him in her arms, sobbing over him, rocking him. Saying his name, saying "No."
The other pediatricians and I stayed in the room. Funny how suddenly you look around and everyone who had been so committed to working on keeping him alive leave once there is nothing else medically to be done. We gave them space, tried to comfort them.
It wasn't for about five minutes that when mom looked at her boy in her arms, touched her hand to his forehead and said (in Spanish), "I don't believe it. I can't believe it."
I felt the wave hitting me.
I walked as subtly and quickly as I could out of the room.
The whole time I'd been telling myself, "don't think it. Don't think it."
Then I thought it.
This could be Henry.
Same age.
Same size.
Same thick eyelashes.
If this could be Henry, why wasn't it Henry? How was this boy the one unlucky to be taken from his mother? Or more appropriately, how was this mother chosen as the one to lose her son?
Why not me?
These are thoughts that if you start to let your mind run free with will make you crazy. Make you questions everything "right" and "wrong" in the world. Make you unable to ever let your child or anyone else you love out of your sight. Except these parents didn't let their boy out of their sight, he was with them. He just got really really sick really really fast.
I'm not a religious person, but how many times can you hear the phrase, "there but for the grace of God go I" run through your head? Answer: too many.
So many times that the question becomes nonsensical. Becomes too unbelievable, almost comical.
There but for the "grace" of God go I.
There but for the grace of "God" go I.
(I'm not looking for a religious debate or inspiration here, please)

After the other family members, a chaplain, a social worker all arrived to the ER to the side of the parents, we left. I couldn't get Tommy on the phone fast enough.
"Bring me Henry," I told him. I told him briefly what had happened, told him "I need to hug my boy."
They came to the hospital. I pulled Henry from his car seat. squeezed him tight, tighter. Never tight enough.
There but for the grace of God go I.

Getting to this part of the story, where my work and my life become intersecting with one another makes me eyes well up again. Here I have to put up the mental wall. "You can't let yourself think that way."
So, I have to stop here before my mind goes too close to that wall, before I test those waters and see what happens when the Pandora's box is opened.

Squeeze your babies if you have them. If you don't have them yet, squeeze them every day when you do have them. They are the most overwhelming joyous and heartbreaking thing that will every happen  to you. My heart breaks every day with love for Henry, and just when I think it can't break anymore, it does and heals itself a size bigger than it was the day before. It's the scariest most vulnerable kind of love I've ever felt, and knowing it could be taken away, like that - just like that- is too much for me to even keep thinking about right now.