Tag Archives: palliative

“What is a DNR?”

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‘I can feel it coming in the air….’ , Phil Collins filling the room. Lovely to see Jason enjoying the concert dvd. His feet resting on the coffee table, slouched sport socks rocking back and forth. Great energy was beginning to build with the anticipation and excitement of Jason’s favourite part of this song, the famed drum roll. ‘I’ve been waiting for this moment all my life, oh Lord..’ , the cue to start getting ready. Air drumming on deck, bated breath, Jason quickly glancing over at me, checking that I was ready….the explosive BA BUM BA BUM BUM BUM BUM BUM…. both of us in sync. Wonderful!  Jason had included this song on the ‘Truck Tunes CD’ that was often playing when we were in the truck. Drum rolls alternating between left and right speakers, Jason drumming slapping his thighs, me drumming on the steering wheel. Sometimes I would go a bit overboard to add an extra spark. Jason would shake his head, whole face beaming, “That’s my Mum!”  as I played it up.

It was such a relief that Jason was now feeling comfortable on the new prescription of hydromorphone. Last week had not been the case. Percocet had rapidly become ineffective for extended pain relief. Messages and calls to Dr. B’s office. My head spinning from their gentle nudge towards palliative care. Catching me off guard. I am sure he mentioned a year. How does the family prepare for this? How does one prepare, for your child to die? How does one prepare, for the agony of watching your other children suffer? Such anguish knowing there is nothing I can do anymore to protect each one of my beloved children, such a lack of control against the harsh realities of tomorrow.

Yes, with the unrelenting force of NF2 raging through Jason’s central nervous system, I had visited the terrifying ungraspable thought, that burying my son was plausible, but it was a damaging territory for me to be in. When trapped in there, it was a dark place, almost like a poison creeping in with the capability of bringing me down crashing. I couldn’t afford to venture into this territory. My children need a strong capable Mum. I need to be a strong capable Mum. I have a horse business to run. Need to source hay for the winter that is upon us. Jason wants to go Christmas shopping. So hard to clear my mind and bring some order to it. Need to just stay in the present.

Today was a good day. Plans were made to go out this afternoon to Jason’s favourite spots. With immense relief, hydromorphone every 6 hours was giving Jason effective extended pain control. Jason was full of life. His foot tapping away, tucking into his second sandwich, Jason was happy, Phil Collins performing his encore set, it was all good. Jason settled down for a nap. Once asleep, I dashed out to tend to the horses. Jason’s sleeping pattern has been changing, now getting up in the night. Behavioural changes are happening. Jason doesn’t remember how he felt yesterday. Each day is a fresh start. This truly is a blessing. Jason is in a great mood most of the time, witty, positive, and determined. Making plans. Jason wants me to set up a meeting with the disability employment worker after Christmas.

Rapid changes were soon to pounce upon Jason again. Jason now needs the hydromorphone topped up every 2-3 hours with ibuprofen in between. Losec has become ineffective for stomach pain. Palliative referral started. Neurological weakness increasing. Traumatic seizures on the stairs. Declining hand-eye co-ordination. Jason needing lots of help with most daily functions. So incredibly difficult trying to get through the demands of the day inside and outside. Instrumental, was the enormous help from my close friend, an amazing support on so many levels. Frightening how fast everything is happening to Jason. Palliative referral still in the paperwork stage. Auditory hallucinations. Visual hallucinations. Confusion. Loss of use of left arm. Ataxia. Palliative papers fast tracked.  A Palliative Doctor on the phone, she lived close by, she needed directions. She will be here soon. Quickly wafting sprays of ‘clean linen’ air freshener in the porch and kitchen hoping to cover up the lingering barn odour from an early morning of mucking. Anticipating the arrival of a Palliative Dr coming into my house triggers intense anxiety. Trying to keep it together; counting the 17 steps as I pace back and forth. Running upstairs to check out of the bedroom window for signs of her car coming up the long driveway. Running back downstairs. Quick check on Jason. Still sleeping. Back to pacing. Back upstairs……Sweaty palms, body trembling. The Dr.is at my door. Sitting beside her at my kitchen table. Jason still sleeping. Trying with urgency to keep my emotions locked down tight in order to competently brief the Dr. Her voice, “…and if he should stop breathing do not call 911” met my ears. Listening to her explain why, was mind altering. Is this really happening? “Have you already signed a DNR form?” the Dr. said. “What is a DNR?” I ask. The answer so heavy and final. Signing the Do Not Resuscitate order…watching the letters of my name gravely appear on the dotted line. The Dr. was a very supportive, compassionate person; had children of her own. I was instantly fond of her and felt relieved that she was here to help Jason and the family. She really got the dynamics of the family. I woke Jason up, introducing this new Dr. as a friend of Dr.B’s. Dr.B. had asked her to pop by. With this approach, Jason would be accepting of her but most of all not be alarmed. Jason had never been open to anyone in the medical profession coming to the house. The Dr. was really lovely with Jason. She treated Jason exactly how I was hoping she would. Jason soon warmed up to her, feeling comfortable with his new Dr., even treating her to a taste of his dry humour. I could tell that Jason was quickly gaining another inspired admirer. She examined Jason and started him on Decadron to reduce cranial swelling and Domperidone for his tummy. Her estimation 3wks-3months. Can’t breathe.

That afternoon Jason was in great form, chatting away with his sisters laughing. I wanted to freeze frame this moment in time and stay in it forever. I felt so much love for them. Watching the three of them; drinking them in, inhaling them in, desperate for this scene to permeate deeply into each and every cell of my body- the sight, the sound, the feel, all to be secured within.

That evening under a clear night sky, the bright moon casting just enough light, I stood filling up the water trough behind the barn. So quiet. Solitude. A hush in the crisp night air. My body crying, wanting permission to physically collapse. A quick glance behind me. My eyes met with the purity of fresh untouched snow gleaming under the moon, beckoning me to rest there. Before I even realised what was happening, every muscle released. Falling, the journey in slow motion, I fell straight back and just lay there. Completely still. Snow up against the perimeter of my body, keeping me snug. Calmed by the organic sound of my exhalation; the white fog floating out of my mouth illuminated by the moon.

Desperate phone call made to the Palliative Dr. after a most upsetting collapse of Jason, bringing us both crashing to the bathroom floor. Loss of upper left side. Hospital bed arrives into the living room. Two days later – Dec.16th, ambulance transport pulls up to the back door. They have been informed, “Where Jason goes, the Mother goes”, as I climb up into the back to be beside Jason. Talking to him. Reassuring him. Jason snoring and unresponsive.

Each day the hospice with the amazing staff became our new home from morning until very late at night at which we headed back to our own beds for a recommended night’s rest. ‘They will let us know when Jason is near the end but meanwhile we need to stay well for Jason’, which I realised and understood. Still never quite sure whether to ignore their well-intended advice. “Expect to be here well over Christmas”, said the Dr. at the latest examination of Jason, late evening of December 22nd. With the added stress of my Mum who had just arrived- swelling in her legs from flying I needed to take her home. The fold up cot all ready remained resting up against the back wall of Jason’s room.

It is the following morning. My cell phone on the bathroom floor rings: I’m in the shower, soon to leave; Kelsey is about to leave her apartment; Siobhan has left her apartment, probably almost there;  Tom is leaving work mid-morning. I answer the phone. The voice, “I am so sorry but Jason has died 15 minutes ago.”

No further surgery for Jason.

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This day is here. Keep it together, keep calm, be strong. Feeling rough. Restless nights. Intestines keep complaining about their rather abrupt cleansing. Siobhan is coming to stay with Jason. Jason does not know that I am going to see Dr.B. I told him that I have an appointment for a check-up with my Doctor. This was one place that Jason did not ask to come with me, this, the dentist and the library!

Jason is in good humour this morning, excitement in the air of anticipating the time with his sister. A change in routine was good. Jason loved his sisters, loved being in their company, he knew that he had the best sisters any brother could ever want. Jason is back to living the day to its fullest. With Siobhan now here to listen for Jason I could concentrate on getting ready. Such a luxury to blow-dry my hair instead of the usual air-dry. Checking my watch, I was right on schedule. All dressed in my ‘off the farm’ outfit- my few pieces of clothing that weren’t horsey mucking out clothes. My ‘hospital bag’ packed early, already in the car so Jason wouldn’t spot it, packed with all the usual necessities and precautionary items : Jason’s medical file, Brain Tumour Assoc. reference book, extra pens, pack of tissues, bottle of ginger-ale, bottle of water, anti-diarrhea pills, anti-nausea pills,Tylenol, a sick bag, all bases covered, ready to aid me in any of those situations. Knowing I was prepared for any sudden affliction, gave me comfort. Now all I had to do, was to brush my teeth, and I’d be on my way. I am in the bathroom doing just that, when I hear a huge crashing sound of dishes coming from the kitchen. Running to the sound; it is Jason in the midst of an intense seizure. His right arm thrashing and he is heading over to the stove and is getting boxed in between the stove and nearby kitchen table. He is going off balance and I grab him from behind, now standing right behind him with my arms clasped around his chest. In Jason’s right hand he has a full bottle of uncapped diet coke tightly gripped and each time his arm swings up and back, the coke shoots out. 950ml of it. Small puddles of coke on the floor make it incredibly slippery. Coke is running off my hair, down onto my glasses and face. Clothes are wet. Siobhan hearing the commotion came running in to help, got Jason and I steadied, as any moment we were going down. With Siobhan now holding Jason, I opened my mouth to tell her that I will grab some towels to throw on the floor so we can get Jason out of there, and a mouthful of toothpaste liquid came drooling out cascading down my chin. The physical component of the seizure was now easing off. Quickly mopping up the coke with the towels before Jason became aware of the mess, I peered up at Siobhan. Needing to cock my head from side to side, attempting to get a clear visual of her, vision obstructed by the continuous trickle of Coke arriving on my lenses, Siobhan, with empathy, softly said, “I know this isn’t good, but, it is kind of funny.” Feeling the trickle dropping to my chin detouring around the drying streams of toothpaste, I became amused with what I must look like. We broke out into a giddy chuckle. It was a welcomed moment. Our friend ‘ Mr. Humour’ always ready to play and lighten the mood. Jason now safely out of there, clean clothes on him, hearing Siobhan reiterating to Jason that he had just had a small seizure, that everything was ok, I raced upstairs. I peeled off my soaked clothes and panicked trying to find something else to wear. All that I had were barn clothes. With no choice, on went an old pair of jean capris and a bright green t-shirt that said Boston Sports in large dark blue capital letters right across the chest. Now running late, I sped off in the truck remaining in the fast lane for the 30 minute drive. My coke-drenched hair dried quickly. It was hot, temperature in the high-30s and without air conditioning I had to drive with all of the windows down. That is, except for mine, the driver side window was broken. Hot air blowing in through the front passenger window caused my hair to have an extreme wind swept look,  sweeping everything to the left, up and over. By the time I got to the hospital my hair was wild and stiff, giving me a much startled frazzled look. There was no movement in my hair, it was set hard. My skin on my face felt unusually tight. Walking through the hospital and standing in the packed elevator I could feel the wide-eyed stares. All I kept thinking was thank goodness I didn’t run into any wasps in the parking lot; they would have been all over my head and followed me into the hospital.

Sarah came to the waiting room to get me. She appeared compassionately surprised by my state. I am not sure if it was the BOSTON SPORTS shouting out from across my chest or the shellacked spiked hair. Looking at her expression I could only imagine what she is thinking. Trying to justify my odd appearance, I started nervously babbling that I didn’t start out looking like this, that I was actually dressed nicely before and so on… My face is feeling so incredibly tight, facial movement feels restricted.  I could feel my eyes growing wider as it became obvious to me.. it’s the Coke. While casually trying to push down the spikes of hair, which was not a bright idea as the sticky coating flaked off in little bits, I could hear my voice going on about the advantages of coke on the hair, a better set than any ultra-hold hairspray…. My adrenaline and nerves were running off with me. All I wanted to do was pull out of this, thinking to myself why did I start? Knowing full well sometimes it is just better not to say anything and this was definitely one of those times. In walked Dr.B., this stopped everything. He asked Sarah to stay which had never, ever, happened before. Heart is racing and pounding. A few irregular heartbeats send an odd flutter up into my throat. Feeling nauseous. A sudden reach for my ginger-ale. We were right down to business. I knew that what I was about to see or hear was going to be a pivotal moment. I could sense the stressful tension of them knowing what I have yet to hear. Pulling up the latest MRI on the screen, I immediately saw the increases in size of the tumours that I was very familiar with. This most recent image showed a large increase in the anterior cranial fossa meningioma. It had more than doubled in size since the previous MRI of 8 weeks ago. Oh No! Poor Jason. This is what was causing the drastic change and debilitating pain. I am floating. As I stare at this lethal monster, my surroundings strangely feel weightless. Two new tumours are confirmed in this radiologist’s report and they were clearly announcing their presence before my eyes. NF2 was showing no mercy. The left mengioma tumour that was removed in Jan 2011 had triumphed in returning, putting Jason’s eyesight at risk again. Dr.B., “Jason would need two major brain surgeries.” I just shook my head. My mind took me back to Jason’s previous surgery, the incredibly difficult days for Jason in intensive care. It was touch and go in there a couple of times. I know that Jason cannot safely go through this again. Jason is weaker, reflected in his current weight of 154lbs compared to a consistent weight of 190lbs up until a few years ago. Dr.B., “So far Jason has done well and has been lucky that nothing has gone wrong, but inevitably something will….an uncontrollable, unforeseeable event.” The words Mortality and Morbidity were present. I asked, ” If Jason had a stroke would he be fully aware?” The answer was “Yes.” That very thought..Jason lying in a bed, immobilized, paralysed, blind, almost deaf, Jason freaking out in a state of panic was an unfathomable thought. An unfathomable situation for Jason and our family. We all knew that Jason would want to have surgery at all costs if he is made aware of the tumour threatening his sight. Jason would not digest the big picture. To Jason, not operating, leaving the tumour to naturally rob his sight would be unacceptable, I do know that. Dr.B. pointed out that Jason is at great risk of losing the optic nerve in surgery itself as there have been two previous resections in this very area; it just takes a change in blood supply to the nerve. My recurring nightmare of Jason being deaf and blind resurfaced in my mind. Prior to this meeting, Dr.B. and his colleagues had met for a round table discussion about Jason’s case, one of many, and the general consensus was not to do surgery, the majority thought the risks were far too high. I hear my voice, “What kind of time frame are we talking about?” I was out of body at this point. It sounded like a line in a movie. Dr.B. answered, “Well considering that this is ‘Jason’ we are talking about, it could be anywhere up to a year, at the most.” I am so afraid for Jason. So afraid for us all. My poor girls. I am dizzy and spinning with this fact closing over me. Trying to process what is happening here, it feels like something will snap in my head and I won’t be able to pull out. I want to scream and run to Jason as fast as I can, the need to save him but I know I can’t. My poor precious son. It was a very emotional appointment. I signed the forms or so I was told later on that I did. I arrived back home in a lightheaded daze, ‘Palliative Care’ information sheets hidden in amidst Jason’s medical file. Taking a deep breath as I removed my shoes, I hear Jason’s voice “Is that you Mum?” As I rise above the haze, cheerfully announcing my return, I approach the living room, digging deep to be ‘normal’. Smiling at my children, my heart hurt. Discovery channel was on; a welcomed distraction.