My Journey with GBS

I will have to admit, sometimes my Mom and I slip when it’s a surprise, even if it is unintentional. That is what happened about a surprise for me. In August, after I was talking with my Aunt Dee and Uncle Alan; I overheard a conversation between my Mom and friend Marilyn. I overheard “Does she know he is coming?” - well putting two and two together, I figured they were talking about my Uncle Alan. I waited a couple weeks and asked Mom when my uncle is coming out - October. I was touched and overwhelmed that he was coming out for a visit. When we spoke on my birthday, I found out not only was my uncle coming but so was my aunt. Wow - couldn’t ask for a better birthday present than that. So excited to see them - a couple of watery eyes occurred when we saw each other. It was good to show them the progress that I have made, even though it was small. Eating in the dining room and showing them where I do my recreational therapy sessions were good moments too. Definitely lifts one’s spiri

The next step in my journey begins at Foothills SSB unit 58. The first week or so it was just settling in and continuing with my range of motion exercises with the physiotherapy team. Then we had a family meeting with my hospitalist, the rehab physician, physiotherapist, occupational therapist, transitional services, my Mom, Marilyn, and Sara to discuss my care plan. The aim is to increase my tolerance in the wheelchair; provide range of motion exercises and get involved with recreational therapy too. It was explained to me they were taking a chance on me as I wasn’t sitting in the wheelchair for more than 2 hours per day nor was I making significant improvements in my limb movements either. So I was told by the rehab physician that I will stay 3 to 6 months and if no significant changes were seen then I will be sent back to PLC for recovery, BUT I will be monitored on a week by week basis. Wow - wasn’t expecting that response. Took some time to absorb that information. Settling into

The day has finally arrived after weeks of preparing for the move to Foothills Special Services Building (SSB) unit 58 acute rehabilitation unit. The feeling of anxiety and nervousness came back as again I am facing the unknown. New staff, new routine, and a new way of doing things. Silly I know, but those were my feelings at the time. Before I left PLC, the hospitalist taking care of me, Dr. Murray, made my Mom an offer for parking at Foothills (FMC). My Mom was finally getting used to driving to PLC and now has to learn the route to FMC and the parking. Of course, parking at FMC is chaotic at best due to major construction going on. Dr. Murray told my Mom that if she doesn’t have a problem walking a couple of blocks, my Mom would be able to park at her house. Wow - another example of the kindness and generosity from people we have encountered throughout this journey. The offer from Dr. Murray gave my Mom and myself peace of mind. With so many unknowns we are facing, knowing my Mom

Even though it was in ICU, we made the best of it and enjoyed my visit week with Bruce. His handy skills cane in handy fixing a few things around the house my mom had noticed plus he hung up the ceiling fan for the master bedroom too. He was very kind and bought munchies for the ICU staff as a thank you for caring for me - they were so enjoyed and appreciated. Now that my O2 sats have stabilised, I was transferred back to my old room on unit 39 where I had to prepare myself to be transferred to Foothills. The first thing - learning to sit in a wheelchair. The pain was incredible - the lifting with a full body sling to the wheelchair, then the simple action of bending my knees in a sitting position. The first try I lasted 30 minutes, then I got to about 2 hours straight before the pain became intolerable. During this preparation process, another birthday has come. I never thought I would be in the hospital for a second year. My dad came to visit and enjoy my birthday celebrations to

So I am back in ICU, in the same room I had been living these past 11 months. Feeling defeated and frustrated that I had to deal with another setback. Worst timing, as my brother Bruce was coming the following week. I surely did not want to be in ICU when he came as this would be the first time he saw me since being sick. As my O2 levels were not improving, off to OR I went for a bronchoscopy as well as a tracheoscopy to see if they could see a reason for it. What they found was nothing I had heard before - I have an A-frame trachea. We could treat it medically, insert a stent into the trachea or major thoracic surgery.I have  read too many charts from coding - risk of complications involving the stent I was not looking for, nor the major thoracic surgery, both which can lead to a permanent tracheostomy. My mom and I decided as I seem to be able to cough sputum up, eat regular soft texture foods and I can talk again - we would go the medical route. So glad we went that route - talking

August 2017 - 11 months in ICU - able to stay up longer, able to get rid of my feeding tube - went from purée, to minced to soft/dysphasia foods and drinking water, juices and soda with a straw. Started to feel normal again enjoying things I used to do. The exciting part was being weaned off respiratory support. It was an exciting day when we were able to take out the mechanical ventilation from my room. Then I was left with only my nasal prongs and my tracheostomy for breathing assistance - was ventilated for a total of 300 days, that sure was a long time. My next big step was to leave the ICU and move to the respiratory unit (unit 39). Even though I knew it was a good thing, I was nervous and anxious about the move to the unit as the ICU staff had become a family to me, so it felt like leaving my safety net as there were still so many unknowns for me. So off I go to unit 39, it was better than I expected. PLC’s ICU has an outreach program that follows patients that were in recently

To get a drink of water I would get it by a sponge stick (not something I would recommend). One day a nurse brought me the cup of water but gave me a straw to drink. I was surprised I had that capability, so was not going to correct her. So for a few weeks it would go back and forth between using a sponge or a straw depending on the nurse. I had told my mom how normal I felt by drinking with a straw. When my mom was with me, it became a funny time looking around if there were nurses around before giving me a straw to have my water. I had 2 ICU nurses, Kiki and Darby who would give me “contraband “ as we called it - I was in so much pain when I was being transferred to the Lazy-Boy chair or when I was being changed. The hypersensitivity I was experiencing made some days unbearable. One weekend, Darby couldn't take my pain, she snuck in my reward (of sorts)- a cherry popsicle. It’s basically water but frozen - such a wonderful taste after 8 months of water from a sponge. My nurse

Months start blurring into each other, it is now springtime with the warmer temperatures coming and the snow melting. Physiotherapy has been range of motion exercises and going on the tilt table but they are starting to lift me out of the bed into a lounge chair. I called it my blue Lazy-Boy chair. It was not an easy task as my body was hypersensitive so just moving from the bed to chair was an episode of tears due to the pain. Plus I was still trached and attached to the mechanical ventilation with an IV pole too. Once I was able to build up my tolerance in the chair, I had my first adventure - my nurses with my respiratory therapist rolled me out to the ICU patio for my first bit a fresh air since September. It was a sunny day, so that felt warm on my face but the cool spring air made it a short adventure. As spring went into summer, the arm motion was getting stronger but still no hand movements. My strength was increasing as I was able to stay longer in the Lazy-Boy chair, I wa

It’s now almost 7 months since my admission. I am recovering from my septicaemia/septic shock; but still no new movement since when I got mad in November 2016 and minimal improvement with my voice either.  During quiet times in my room,  I get a lot of time to think. It was hard to concentrate on the TV shows or the music being played on the CD player. You ask yourself - “Is this it? Is this my life”. Will I need to accept the reality I am a quadriplegic and totally dependent on others? Then you get angry - “Why me? Why did you choose me to have this condition? Why are you making my mom go through this again - another daughter facing a tough future, how is this fair? My Mom had to go home for her own follow up medical appointments as she faced her own medical battle. After 30 years of being cancer free, January 2016 it came back in her sacrum and she had to have major back surgery followed by 15 rounds of radiation. So lucky for me, I was able to be there for my Mom for the majority

Just as I started this journey, in March 2017, my mom and I had to face another life threatening episode. In September 2016, my blood pressure went so low I went into cardiac arrest, suffered complications from my PICC lines with infection and blood clots to my lungs and lower left leg. This time around my body was suffering from septicaemia and septic shock with a high fever. Similar to September, I have no memory of this week of touch and go moments. From what I have been told - the nurses brought in a bed for mom to sleep on so she would be with me around the clock. Plus I had more IV lines for the blood transfusions and antibiotics. With many people keeping me in their prayers and my own spirit and medicine I received; I fought though another battle and came out in the end to win. I will face different challenges in the future, but this was the last major life threatening episode I would have to face. For that I was grateful, both for myself and Mom. My Mom was there for both me

Right from the beginning, medical staff (made up of doctors, nurses, respiratory and physiotherapy therapists), treated me with dignity and respect, plus encouraging me that things will get better. One example was Dr. Zuege looking for devices which would allow for me to be trached and speak. He found such a device but it had to be shipped from Germany. That was beyond my imagination that a doctor would do that for me. It finally arrived a month or so later, it was exchanged with the other trach. It was tough to put in place, painful actually. It worked initially but unfortunately I developed aspiration pneumonia from the excess sputum when using the voice component. We gave it a good “college try”, but in the end I had to return to the old trach device and go back to lip reading. Though it was frustrating, now lip reading for 6 months, I was still appreciative of the efforts made to help me get a bit of my "normal" back. Can’t fault them trying for me.

The last place anyone wants to be to celebrate Christmas is in the hospital; but there I was - in ICU with tubes and all without a voice really. In helping with communicating, the respiratory therapists have tried to turn down my trach so I could try to speak. I was quite hoarse and quiet at first. Unfortunately what followed was plenty of coughing and suctioning out sputum that I couldn’t cough up on my own. Despite that outcome, I was happy to hear voice coming; my voice. My first words were “Hello” and “I love you Mom”, of course both brought a smile to my Mom’s face plus made Dr. Zuege happy too. Santa surprisingly knew where to find me too. I woke up Christmas morning and there was a large bag of gifts plus another bag from the NICU staff. I waited for my mom to arrive so we could open the gifts together. We were blown away by the generosity of the PLC Hospitality volunteers - hand creams, mirror, nail polish, a colouring book to name a few. I received a beautiful pink rag blank

You know that question - “What body part do you like?” Being overweight for the majority of my life, there are not too many parts I would choose, but I do like my nails. They are strong and don’t chip much. You can shape them (square or round); keep them plain or you can choose any colour of the rainbow. Funny enough, young kids found them entertaining tugging them or pulling my fingers back trying to take off the nails. Now being in the ICU for over 2 months, my Amanda gave me a fun afternoon of pampering by having a manicure. She brought her friend Sandy, who gave me the full treatment - soaking my nails, getting them cut and rounded nicely. Being Christmas was only a few weeks away, she painted my nails with a Christmas red colour with glitter. By the end of the afternoon, had a smile on my face, as it was something that was special for me. Thank you Amanda and Sandy for the special gift you gave me. Sandy is a Prayer Warrior too, so she gave a touching prayer before she left th

Now that I am awake longer, the first thing to do is begin awaking the nerves as well as increasing the muscle tone in my arms and legs. As they say, “If you don’t use it, you lose it” - this definitely applies to your muscles in your arms and legs. I was introduced to ICU physiotherapist, Maureen. We began with range of motion exercises working the shoulders, arms, hands and lower legs. Let me tell you it was painful and I had little range in the beginning of our sessions. Definitely didn’t help that I was developing hypersensitivity to touch to my limbs, so the slightest pressure would bring agony for me. The therapists and the nurses knew I would need pain medication prior to my physiotherapy to help manage my pain level. In preparation for applying to learn how to walk again, Maureen brought a flat table into my room. Wonder what torture she had in store for me with this table. Ever heard of a Tilt Table?  It is a form of torture (haha). Once I was transferred over to this tabl

It was difficult to hear everything around me but struggle in communicating and basically lying flat on the bed. I couldn’t tell you how many times I would have tears and I struggled to say why. As one could expect it was tough absorbing the fact that in a matter of weeks I went from a walking able-body person to basically a quadriplegic person. Hearing from the doctors that this was the worst case of GBS they have seen and the recovery will be long and slow. How do you not get angry and frustrated by this situation? Well one night that is exactly what I did. We were struggling to get my arm into the hospital gown. I became frustrated and angry and next thing I know it, I felt a release as I helped push my arm into the gown sleeve. This is when it sunk in that my shoulders were coming alive. Yay! with my shoulders I could move my arm up and down!! I should try to get mad more often. Maybe I will prove the doctors wrong and my recovery will be quicker than they predicted. Hands

By mid-November I was more and more fully conscious, but was left with tubes coming from my throat as I was attached to a ventilator plus had a tracheotomy tube; had a PICC line for my IV lines; had a nasogastric tube coming from my nose and had a feeding tube (gastrostomy) too. Quite a change from before I was sick. Plus being in the ICU with all the bells and whistles going on in my room, it could be intimidating too. Taking advantage of the time I was awake, my mom would read the cards that arrived. Wow, talk about feeling overwhelmed by the love, encouragement and support given by family, friends and coworkers. I was not aware of the impact I had made on others, so was not ready for the outpouring of love. It amazes me (even now) how a simple thing of showing kindness and encouragement can be returned to you.  Looking the way I was, I am thinking it could be scary seeing me this way for children. I remember in late November, my friend Sara and husband John brought their 5

Initially my way to communicate was through facial expressions. Flicking of my eyes, to raising my eyebrows to say yes or no. I was asked to “give me a smile” once I got my facial muscles back. It could be because I was ventilated and trached that when I finally was fully conscious, there was no voice when I talked. They brought in a Speech Pathologist to help. They gave us an alphabet box and we would play hangman game, “first word, first letter “, to communicate. It was frustrating because it took time to figure out what I wanted to say. As my neck muscles were coming back, I was able to start moving my head side to side and up and down. Having that movement the Speech Pathologist decided to try a computer program in which I could type out what I wanted to say by moving the cursor by moving my head. The cursor was really sensitive which became frustrating trying to get the cursor where I wanted. Plus with my weak neck muscles, the whole process left me tired after a few minutes.

GBS side effects in recovery are, impact to one’s blood pressure, fluctuations in body temperature, body sensations due to touch, and of course pain. I developed bradycardia which brings my blood pressure low. During my initial 6 weeks in ICU, it was the bradycardia condition that lead to me having a cardiac arrest and having an external pacemaker. This became an issue when the nursing staff had to turn me for changing. I seemed to be okay when turned to my left side, but when they turn me right I would have trouble breathing which lead to panicking and tears.  Plenty of tears were cried as they had to turn me for changing as I would ache with even the slightest touch to my body. Sometimes the skin sensations were like a burning feeling. There were times where my pain came from imaginary limbs. Closest thing I can compare it to is phantom pain.  I remember my sister Kathryn talking about phantom pain after her arm was amputated. The nerves told her that her arm was there but of

Much of November was trying to stay awake longer each day and absorbing the magnitude of my situation. I couldn’t do much - no movement in my limbs with little moving of the neck. To top it off, I had no voice to communicate. I was learning how to communicate with my mom, the nursing staff and any visitors. The speech therapy team try to assist with an electronic device as well as a paper system of pictures and the alphabet. The device was connected with my eyes and the computer cursor. What an ordeal that was! The computer had to be placed in front of me to work and then the cursor was ultra sensitive with eye movements. Very frustrating! In addition, it was taxing on my neck doing the head movements to move the cursor.  As I wanted a way to communicate, I continued to try using the device despite the neck pain. But in the end, I couldn’t do it. It was too frustrating, tiring and painful, plus bulky as the staff had to set up the computer each time I wanted to talk. The communicatio

Now that I was staying awake more with each passing day, the severity of my situation slowly became real. I found out I had a rough 6 weeks - near death, including a cardiac arrest due my bradycardia which required a temporary external pacemaker, getting blood clots in my lungs and left leg due to my PICC line, issues with low blood pressure and pneumonia. I received many treatments of IVIG (Intervenous Immunoglobulin), common treatment for this disease. Interesting I had all these complications at the same time I was having those vivid dreams. Wonder if there is a connection? When I awoke, I could not move my limbs and I did not have a voice. All I had was facial expressions to communicate. I was scared. Dr. Zuege came in my room when I was awake, he asked for his smile, which I gave him. He finally told me that I had Guillian Barre Syndrome or GBS. What the heck was that diagnosis? It seems a bacteria such as Campylobacter (found in under-cooked chicken)  attacks and destroys your

Have you ever wondered what dreams mean? I would love to know what my wild dreams are to reflect. I was in darkness other than small moments of drifting to the present to hear Dr. Zuege say “Let me see that smile.” or hearing my mom say “I don’t know she is doing that, I can’t even do that.” This was in reference to me raising my eyebrows as that was the only way to communicate. My darkness lasted about 6 weeks from my admission and during this time I had the weirdest dreams. Weird, but there was a theme. I was represented as a cow and there was a BBQ involved. Growing up I was a shy person with self-esteem and self-confidence issues, so one dream had me at a BBQ and I obviously did not fit in with the crowd. Next thing I knew,  I was being prepared for the BBQ!   The crowd was teasing/bullying me which hurt me and I didn’t know why I was being treated this way. So I prayed to God to be there with me as I felt hurt and scared. I closed my eyes for the pain to stop. A peace came over

Friday September 2nd, 2016 started like any other work day - I worked late playing catch-up before a long weekend. Last thing I wanted to do was cook supper, so I went to Extreme Pita for their Chicken Bacon Ranch Pita. I ate while relaxing with the TV, like I normally do. Unfortunately, later that night I felt feverish and achy which resulted in throwing up. Not my idea of starting a long weekend, which got worse by having diarrhea/stomach flu for the next 4 days. On the Thursday I was finally able to keep some toast down. Laid low and watched some TV that day. On the morning of Friday September 9th, I woke and my hands were pins and needles, but didn’t think anything of it as I thought I slept on them so I went back to bed. Woke again a few hours later, my hands were still feeling like pins and needles. It wasn’t until a few hours later when got up from my couch that my legs became wobbly. That freaked me out and knew something wasn’t right. So what does a girl do? You call your