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Jason’s epilepsy surgery

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Jason went into the OR at 9.00am. Jason was calm, brave and ready for this surgery, this was going to make a big difference in his life.

My cell phone stayed clasped in my hand constantly checking it. The neurosurgeon wanted me to carry it in case there was a problem, a decision to be made. The waiting for news good or bad was brutal. The fear of  not knowing what was happening was overwhelming. With my whole being in an accelerated state of anxiety the only way for me to stay together was to pace back and forth, always sticking close to the elevator where the patients would come up from the OR. Everyone’s eyes were constantly fixated on the floor numbers above the elevator door awaiting their loved one. When the elevator floor number would light up everyone jumped up hoping praying that this is theirs, the doors open it’s not Jason, one other family is overjoyed. Where is Jason? Is he alright? My mind would be going crazy imagining everything that could go wrong. There were five or six other families in the ICU family room which slowly over the day dwindled to just two of us. The elevator floor number lit up. As I hear the elevator approaching our floor I hear many voices and a heart monitor, a steady strong rhythm..beep..beep..beep..I knew without a doubt that this was Jason. The doors opened, the best gift imaginable, it was Jason. He was surrounded by a full team of nurses, anesthesiologists and Drs. Jason was ok and doing well considering the ordeal he had just been through. OMG that emotion and feeling in my heart, so many layers to it. Such intense relief, joy and worry.

It was now 5.00pm. Jason had been in the OR for 8 hours. The main man, the hero of the day Jason’s neurosurgeon was on his way. As he approached I met his eyes looking for signs of concern. This unspoken exchange expressed in the eyes and face between the mother and your child’s surgeon is a language all in itself.  I was really overwhelmed and indebted to this man as we shook hands, the gifted hands that had performed a miraculous surgery and returned Jason back to us. It had been a challenging long surgery. He had removed a lot of scar tissue and some nodules which possibly were residual tumour since they had a vascular component to them. The issue of pressure changes and swelling was managed, they didn’t wake the tiger !

Jason was now set up in the ICU directly in front of the nurse’s station.  Jason sensing we were there opened his eyes and in a slurred groggy voice said “I’d like a Tylenol and a Coke please?” then fell back into his deep drug induced sleep. That was the best thing and so funny. Right away we knew Jason was ok. This was the Jason we knew. The nurses questioned me what does Jason need? I told them “a Tylenol and a Coke” they laughed and right away they knew what an amazing special patient this was.

I didn’t feel well at all. High pitch ringing in my ears, a cold clammy sweat, ‘I think I’m going to be sick’, I think I’m going to faint’, the mad anxiety of finding a vacant chair as I could feel myself starting to go. Of course nurses had spotted what was happening before I actually met the floor. A chair was slid underneath me, a paper bag put in my hand, a cold cloth on the back of my neck and my head down between my legs. Here I was in the middle of the ICU amongst all these critically ill patients and I had my own small team of nurses for 5-10 mins. I felt bad about using their valuable time but I guess a Mum on the floor is a real liability. They said ‘it is the shock of seeing your son in this state that caused your body to react this way.’

Arriving back the next morning I couldn’t wait to see Jason, I couldn’t get to his station in the ICU fast enough. Eagerly anticipating Jason I was met with an empty space. I sank. I will never forget that feeling. A nurse appeared “Jason has been moved. Jason did so well last night so he has been moved to the less critical part of the ICU” pointing to the other side of the room.  I’m sure my face said it all as she stroked my arm. “Don’t worry he is fine”.

There he was, he looked so young and angelic just quietly lying there, no sounds of fussing or moaning, sheets still smooth and straight. Jason had such a strong constitution. Even when the heart monitors were displaying raised vitals reflecting the trauma of  pain Jason still would never complain. The nurses and doctors had never met anyone quite like Jason and  this was where he got the label ‘STOIC’. Jason had this amazing ability to go deep within himself and to get on with the healing process.

His bed had been raised to about a 45 degree angle to help with any swelling.  He looked good considering less than 24 hours ago he was in brain surgery. I survey the monitors, all numbers look good. I notice that they have removed some of his head dressing plainly revealing the drain site,a clear tube of slow moving liquid protruding out of his head. I started feeling a little light headed. I hear an alarming CODE BLUE on the other side of the room followed by a mad scurry of staff.  Out of nowhere high pitched ringing starts in my ears…Oh no!!! Not again. Head is getting dizzy, Shit!!! I can’t faint now. In haste I spot a blue chair of some sort behind me, I grab it and start to collapse into it. A groggy voice says “I wouldn’t do that if I were you Mum” followed by snoring. I look and I am about to collapse into a commode ideally equipped with 4 wheels. I could only imagine the image Jason had when he opened his eyes and saw what his Mum was about to do…Mum dropping back into the commode, bottom getting stuck in the hole,the jolt setting the commode free to roll down the ICU aisle with Mum shrieking with arms and legs sticking up in the air. This scenario provided many laughs throughout the years.

It was a very hard week for Jason at the MNI but finally we were back home. Jason was resting lots and in less pain with each passing day. Since his surgery Jason had not had a seizure which was absolutely amazing and Jason was thrilled to know that. Possibilities were opening up!  It had already made a difference in the family’s anxiety level.

Then a change. At the incision site Jason began to have increased swelling. I was concerned. I called the MNI and they said as long as the incision isn’t infected it is probably normal post-op. Sure enough Jason didn’t have a temp but Jason wasn’t himself and I knew with a mother’s instinct that something was seriously wrong. I took pictures of the swelling and emailed them to the Neurosurgeon. He still said to wait and see. Two days later Jason is dizzy, vomiting, bad headaches, not well at all. The next thing we are at the MNI in the neurosurgeon’s office and yes sure enough he has a CSF leak. Jason was admitted for emergency surgery the following morning. I was so scared for Jason as he was still recovering from the first surgery. Jason was in the OR for about 4 hrs. Thankfully they managed to find the hole where fluid was gushing out. They repaired the hole with a glue type substance and sutures and wrapped his head very tight. They started an aggressive course of antibiotics. Jason’s strength and tolerance was unbelievable through all of this. Jason humbled doctors and nurses over this challenging time. Within a week we were back home and I was to remove the bandages within a few days and to report the findings to Montreal. Thank goodness such a relief to find there was no evident swelling . Surgery had been a success.

Soon after Jason registered himself to start college that fall.

Waiting for the phone call at haying time

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Hoping that each time the phone rang it was the Montreal Neurological Hospital was beginning to take its toll.  Seizures were intense. Hospital bags were packed ready to go at a moment’s notice. My new contact person was trying to get an emergency spot for Jason and if a bed became available we had to get there right away since there were many other ill patients pushing on their doors, all desperate for a bed.

Meanwhile life carried on at a busy pace. The hay needed to be cut, baled, and put away. The riding arena needing to be harrowed and raked. Grass ring and trails to be mowed. Horses, as many as 30, needed to be fed, watered, checked over, stalls mucked, meet the farrier, the vet, all of it with a professional smiling face. I am FINE- fearful, isolated, nervous, exhausted.

Haying was a very anxious time for me, in fact I dreaded it. The summers were always shadowed with Is it the right time to cut the hay? The hay needs to be cut, is there a clear hot sunny 3 or 4 day window in the forecast?  I found it very stressful and always a sense of urgency and unrest. Inevitably the forecast would change once the hay was all cut or a dark rain cloud would roll in and park over top of us rudely dumping the contents, damaging the hay. All hay making machinery would be out in full swing, tractors, hay rake , hay bine, wagons. Everything inside of me, every cell, was on alert to keep my son safe, trying to keep an eye on him which wasn’t always possible. The threat was that Jason could lose his balance or have a seizure in the wrong place and fall into one of the many pieces of machinery . This happened when Jason was around 13. Jason was on the hay wagon with me so that I could keep a close eye on him. Jason always wanted to help, to be where it was all happening.  I turned to grab a hay bale from the mounted pile and as I turned back around I saw Jason mid step going right off the end of the wagon, free falling into the back of the tractor’s PTO system and hitch. He lay still. I hysterically screamed for help as I was jumping off the wagon but over the elevator noise Tom couldn’t hear me. Jason lay wedged between two of the metal bars, not moving. He was breathing, his body was in shock. He was dazed and confused and  didn’t know where he was…..a seizure. Jason’s shoulder and hip took the impact of the unforgiving metal. It was a miracle that Jason escaped serious head injury. I remember thinking someone must have been watching over him. Jason’s head lay in the narrowest space between the bars  with barely an inch to spare on either side. It was like someone had carefully placed his head down amongst this huge contraption of metal. Tom had now spotted this and raced down the elevator like a fireman down a pole and we lifted Jason out of the entanglement. Jason had scrapes and deep bruising. It was so frightening for Jason and we all were shaken for days. After seeing Jason’s neurologist the medication dosage was increased slightly.

Back to Montreal – still awaiting the phone call from Montreal another week or two had passed and no word.  I was getting frustrated and upset. Then this happened:  It was a typical haying day. Hot,humid, high 30s, full sun, high UV warning, my Irish/British freckled fair skin protesting, screaming against the piercing damaging rays of the scorching sun. Heavy air, hard to breathe, heart rate up. Hay chaff mixed in with sweat and sunscreen looking like a greenish mould over my skin. We had a full wagon of hay to unload to free up the wagon. Jason was in the house having a rest and I would check on him. We needed to go out to the back field to bale the raked hay before the day was over, rain was on its way. I had to operate the tractor pulling the baler and Tom with his nephew would be on the wagon stacking. This field is not close or visible from the house so I had no choice but to bring Jason with me and he would wait in the truck. Jason was up for that as he wanted to be close to where I was. The truck is a white heavy duty crew cab truck. I parked the truck in the shade under a few trees that were on the edge of the field that we were baling. Jason sat in the passenger seat with the windows down and said he would be fine. I did not feel good about this but there was no choice, the hay had to be done. Jason wanted to listen to music so I left the keys in aux position. I could see Jason from the tractor when driving towards the truck. Each time I would swing past the truck I would give Jason a big wave, smiling, appearing that all is cool with Mum and he would do the classic Jason wave and warm smile right back. Then on one of the passes I noticed that he was in the driver’s seat but still he gave me the usual wave with his heartwarming smile beaming off his face . The driver’s side was actually closer to the tractor so it made sense that he might move over. As I was coming across the field again in the direction of the truck I looked for the dazzling white by the trees that were part of my horizon. ‘Where is the white? My stomach lurches. Thinking I was disorientated with my surroundings I urgently scanned the area. ‘No, those are the trees, there are no other trees. How can this be, where is the truck? Did I have heat stroke? Was I hallucinating?’  Panic set in. I looked further beyond to the far end of our next field and I spotted a white flash of the truck’s tailgate going through the opening in the trees back to the driveway. What the hell is happening? I pushed my feet down on the clutch and brake and the force of the machinery from behind pushed and raised me up off the seat .I was standing up bracing and holding onto the steering wheel, still keeping my feet on the peddles. I slammed the PTO off. I was trying to bring this mother of a tractor and baler from 1800 rpm to zero now. Not a safe or sensible thing to do but I needed to get out of this cab right now. The thrust sent Tom flying almost right off the end of the wagon. Tom didn’t know what the heck was going on. I leapt out screaming  ‘Where’s Jason! The truck! What’s happening? Who’s driving? ‘  Jason does not have a driver’s license. He has never driven the truck.

A long row of cedar trees go up the full length of the driveway making it impossible for me to see if the truck was there. I ran as fast as I could across the fields. It wouldn’t be until I got across the fields towards the house that I would know where the truck was. I was so scared as to what I would find once I got there. My mind took me to a vision of the truck wrapped around a pole. We have hydro poles all the way up the long driveway. Then my mind dragged me to the tragedy of what if the truck turned left out of the opening he would end up driving right into traffic on the main road into innocent people. I was beside myself with this possibility. As I got closer to the house I saw the truck parked in front of the house facing back down the driveway. Thank God. I see Jason coming out of the house. When I got to him it was evident that a seizure had happened as he was very confused and unaware. He told me he didn’t know why he was at the house and didn’t remember driving the truck. It was truly a miracle, once again, that he was safe. It was as if someone else had driven that truck. Jason had obviously had a seizure while he was sitting in the driver’s seat and found his hand on the keys and somehow started the truck and put it in drive. There were so many possibilities of a serious accident to Jason or to others happening on that drive from the  back field to the house. Jason  had to pass through other fields with ditches, fences, cross country jumps and then go up the long driveway past barns and sheds, horses, boarders, before he would arrive at the house. Later on that afternoon he had another long seizure. I was so shaken up. Then I got angry and frustrated that still I hadn’t heard from Montreal. This cannot go on.  Late that afternoon I sent an urgent email to my contact with the details of the incident. I received a prompt reply:  ‘That incident could have been very tragic, but then almost all of them could be. I hope that we are able to come up with a solution for Jason. You must be holding your breath every day that everything is OK. I can’t imagine’.

The very next morning I received ‘the’ phone call to confirm Jason a bed and by that afternoon we were at the Montreal Neurological Hospital.