Monday, September 18, 2006

Heroic Measures

So saturday night I'm in Toronto at Film Lounge, dancing it up sober at a friend of a friend's birthday bash. At 5:00 a.m. my cell phone rings and I see on the display that it's the nursing home. I can hear them over the music but they can't hear me, I shout that I'm going outside and that they should call me back in two minutes. I make my way out to the smoking area in an increasing state of panic (they've never called at 5:00 a.m. before) and call them back. They tell me that Tammy's running a major temperature and that they think that she's developed pneumonitis; and that as per the advanced care directive I signed they'll try and keep her comfortable. I have trouble picturing that things could be that bad, and say that "I'm not prepared to lose her today" and to send her to hospital if they think it's warranted.

Too shaken not to tell somebody what's going on, I go back upstairs to say goodbye to my friends, singling out Sheldon in particular. I forget how much I told him exactly, but he got the jist that the nursing home had called and that I had to leave, rapidly. I give him a firm handshake and head downstairs to the street for the block and a half walk back to the car. On the way I call Linda, Tammy's mother, and fill her in. She's surprised that they called me over just a high temperature and I mention how they started quoting the advance care directive; and how much that had me scared. She has to go to work and won't be coming in to the home, but wants me to call with an update when I get there and know more. I hop in the car and begin the long drive home, heading down Spadina in heavy fog. The thoughts race through my head and I race down the streets... 120 on the Gardiner, 130 on the 427, 140 on the 401. The taillights ahead are visible out to about 500m, but as I pass the last of them all frames of reference disappear. I don't slow down.

In Cambridge my phone rings and I drop to 120 to take the call. It's Linda and it turns out that she's heading down to the nursing home after all. She tells me to take it easy because of the heavy fog; I don't mention that I'm already practically there. As I pass Sportsworld the fog breaks, the stars come out and there's a text from Sheldon, "Hope all is well buddy." I text back, "They were talking about the 'No heroic measures' order we signed on the phone which frankly scares the shit out of me. I'll be there in 10 more mins and then I'll know what's up. Hoping it's not as bad as all that..."

A coffee stop later and I'm at the nursing home. Kathy, the nurse manager I'm most familiar with, is just walking in and says she's surprised to see me there so early. I tell her what's up and we head upstairs together. The nurse on Tammy's wing fills us in, Tammy got frustrated at noon when they were out of the meal she picked and was fidgety and threw tantrums for the rest of the day (her latest course of meds is not working on her mental health problems, if anything it's made them worse). At bedtime she had a slight temperature so they started monitoring her overnight. It started rising dramatically and they gave her Tylenol to help bring it down, but by 4:00 a.m. it was nearing the mid 40's. They consulted her doctor and believe it's pneumonitis -- Huntington's patients lose coordination as cells in the brain die off and can no longer do any of the things we take for granted, including swallow. Things often 'go down the wrong pipe' and aspiration pneumonia is the leading cause of death. I go to Tammy's room and the bed is empty, they forgot to mention that! Apparently the ambulance picked her up half hour before I got there, why didn't they tell me that, or call?

I try to phone Tam's mom back to re-route her to the hospital but can't get a hold of her, she'll just have to find out the way I did. I text Sheldon some more details and he asks if she's stable. I tell him that I don't know and will have to turn the phone off when I get there, but will try to update him a bit later. "No worries. Take care." I feel bad leaving him hanging like that, he's a recent friend and only peripherally aware of Tam's condition, but he already knew something was up it just seemed logical to keep talking to him.

I get to the emergency room and there's that familiar awkward moment. You don't want to put your name on the triage clipboard because there's nothing wrong with you, but there's no staff around to talk to either -- you have to interrupt someone else's triage to find a warm body with a keycard. "Yes I'm rude; but you just have a scrape on your knee and my wife may be dead..." There's got to be a better system.

I go in and Tammy's on a gurney behind a curtain hooked up to a half dozen sensors. Her heart rate's high at 120, respiration high at 40, temperature high at 41, BP dramatically low. 84 over 40. The nurse introduces herself and tells me that Tammy's temperature's been dropped with ice and Tylenol, and that they'll be starting an albumin IV to bring her blood pressure up. The doctor is told that I've arrived and comes in to tell me Tammy's probably not going to make it, there's a chaplin and counsellors on call if I need them. I say "No that's okay.", not even thinking about Tam's recent baptism and how that would be important to her. I hold her hand for a few minutes and then have to go out and tell somebody. Outside I turn on my phone and call mom and dad, they're going to come in. I text Sheldon an update then turn off the phone and head back in.

Tammy's mom soon arrives and I update her on the situation. She tells them that Tammy's Roman Catholic and asks for a priest -- I feel like crap for not thinking of it. They add the albumin drip, her blood pressure increases slightly, her temperature's almost normal. She's been white and completely motionless the whole time, usually there's random twitches from the Huntington's disease. Her eyes haven't opened, there's no sign if she's been hearing us or not. Suddenly she starts to toss and turn and gets some colour on her cheeks. I'm getting hopeful but then she throws up into the mask, she could choke to death! I pull the mask off and her mom and I turn her onto her side, fumbling for the call button. We can't find it but I hit the yellow button marked 'Staff' on the wall behind her bed. An alarm sounds and there's instantly two doctors and three nurses in the room. They clear her airway and we have to leave the room while they clean her up. When we get back in they clip the call button beside her head and point it out to us. They ought to make that other button red and label it 'Emergency'.

Over the next hour Tammy's mom and I take turns making calls, a priest arrives and performs the sacrament of Anointing of the Sick (last rites). We're informed that her brother has arrived in the waiting room, followed shortly by my parents, and we take turns in the room with Tammy. She still doesn't respond and her colour's gone back to white with slightly purple lips and eyelids. We wait. Dad's undergoing chemo and has to go home to rest; mom stays. Tammy's taken for more x-rays and eventually we get a bed up on the sixth floor. Her brother has to say goodbye, he's leaving for a business trip that afternoon. I have some lunch, and then my mom says goodbye to take the bus back home. It's Linda's turn for lunch and when she's back upstairs she tells me to go home for some rest, since I'd admitted to my all-nighter in Toronto.

I softly say goodbye to Tammy and kiss her on the forehead. And she wakes up!

We ask her how she's feeling and she keeps repeating "I feel fine" and asks for her glasses. It's unbelievable! I stay with her another fifteen minutes or so as we explain everything that's happened, she agrees that I should go for some sleep. All the sudden it feels that everything is better, that she'll be out soon and we'll get to celebrate our anniversary after all (we had just booked a weekend at Fern Resort). I leave the hospital with a spring in my step, music cranked on the stereo. Worried that I'll forget to stop by the nursing home for her glasses on my way back in, I head there before going home. On the way I call mom and dad, my sister in Alabama (who'd just been given the grim news a few hours earlier), and text Sheldon. At the nursing home I give Kathy the story, and have a long chat with her roomate across the hall.

I get home and have to stay awake a while longer to feed the cats, one of whom is on prescription food and has to be fed in a separate room, keeping me up even longer. I turn on the tv to give the cat some time alone with her food and it turns into my usual fatal mistake. I stay up for another hour and a half, and get only two hours of sleep. I have dinner with mom and dad, then head back to the hospital to relieve Linda. She heads home, and mom and dad arrive shortly afterwards, having met Linda on her way out. They stay for a bit and then dad's too tired again, I can tell that he's really wiped out. After that I stay with Tammy for another hour, before using the end of visiting hours as my excuse to head back home.

I think a lot about the decision I made. On the phone passing through Cambridge, Tammy's mom urged me to think about whether or not to send Tammy to hospital. As I parked the car at the nursing home I actually made up my mind that we shouldn't. Of course by then the wheels were in motion and it was already too late. I'd always figured that there would be a slow decline, that she'd end up in hospital for months like her dad; and that 'heroic measures' would mean a chest tube or a dramatic resuscitation with paddles. I never thought it would mean Tylenol and an IV, the result of a simple statement made on the phone in a nightclub, "I'm not prepared to lose her today." If she'd stayed at the nursing home she would actually be dead right now, at this very moment, and if she recovers to get our weekend at Fern this will all have been worth it. But in the middle lurks a terrible grey area, that this is just a long and miserable hospital stay before the ultimate end. I hope not, and more than that I hope for this: That I am prepared to lose her tomorrow.

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At 9/18/2006 11:02 AM, Anonymous Bonnie said...

Hey Kev,

I am so sorry you had to experience this! It took years for me to be ready to let my dad go. And he was old (81) and was supposed to die. We also talked about death with him, or rather in his usual manner he dictated what he wanted done (not to suffer) - by doing this he took the away the difficult part - we didn't have to make a decision. He demanded no life support (including IV). I cannot imagine being in your situation (akin to losing one of my children); I could never be prepared for that. You showed great strength and I'm glad your family was there to offer support.

At 9/19/2006 8:43 AM, Anonymous Sheldon (&amp; Lea) said...


I have to agree with the first comment to your blog--regarding your strength. I'm learning more about what real strength is by getting to know you. I saw the look in your eyes @ film when you got the call--I immediately knew something was wrong, very wrong. Having known only a little about your situation, I immediately grasped the seriousness of the situation. I can't even immagine of being in your situation, having a clue what you went through, what you're going through. Logically, in my mind, quality vs. quantity of life and all that, i have my own decision,b ut if it ever came down to it... like you said "I'm not prepared to lose her..." We cling to life so preciously, and I suppose with very good reason. Regardless Kev, Whatever trials may come with this, we're there for you, with our thoughts and support!


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