Medical Intensive Care Unit

12^th FEBRUARY – 10^th APRIL 2016

Day 8 with GBS…I have no definitive memories from this moment, everything that I share with you about this period in my journey is as told to me…I attempted to take a sip of water and started choking, the paralysis had ascended to my chest and throat muscles, I was unable to swallow and was going into respiratory failure. I was immediately intubated and placed on a mechanical ventilator to breathe. Arrangements were made to transfer me to the Medical Intensive Care Unit (MICU).

Day 9 / 13^th February: The diagnosis of GBS was confirmed and I started a 5 day course of Intravenous Immunoglobulin (IVIG). I was now completely paralyzed from the neck down, heavily sedated and unresponsive. My blood pressure and heart-rate were either dangerously high or low which caused the monitors to beep continuously. I had a fever and my skin became dark and blotchy. I had in an endotracheal tube attached to a mechanical ventilator for breathing, a nasogastric tube for feeding, a central venous catheter in my neck for medications, an intravenous catheter in my arm for fluids and a urinary catheter. Within 24 hours my health had deteriorated drastically and I was now totally dependent on life support machines. It was shocking and devastating for my family and friends, having never heard of Guillain-Barré Syndrome to witness the speed at which I became critically ill.

Days passed without any improvement in my condition. The paralysis ascended to my face, my eyes were rolled back in the sockets and my eyelids were not closing completely. My eyes had to be lubricated frequently and covered to prevent irritation. I was retaining fluid and my entire body was swollen.

Day 15 / 19^th February: My lung was punctured and it collapsed. I had to undergo an emergency procedure to insert a chest tube to drain the excess air and fluid and allow my lung to re-inflate.

My blood pressure and heart-rate remained a major cause of concern. I was taken off the sedatives but was still unresponsive. My white blood cell count was high and my red blood cell count was too low which suggested that my body was fighting an infection.

Day 18 / 22^nd February: I had a blood transfusion. For the first time since being in MICU I was alert, responsive and was able to communicate with my eyes (blink once for yes and twice for no). Everyone was optimistic.

Day 20 / 24^th February: It was now 2 weeks since I was intubated, as an endotracheal tube is only used in the short term and I was not yet able to breathe on my own it was converted to a tracheostomy tube. (A tracheostomy tube is a curved tube that is inserted into a hole surgically made in the neck and trachea). All of the other tubes were still in place.

Each case of GBS is unique, it is expected that your condition will deteriorate suddenly, peak, plateau and then improve, the length of time for each phase varies significantly from person to person. Several days had passed with no negative changes in my health, it appeared as though I had plateaued and everyone was eagerly looking forward to the improvement phase. That was until Day 23 / 27^th February; my fever spiked, my red blood cell count dropped drastically, I became jaundice, my blood pressure sky rocketed, I started having seizures and I was retaining sufficient fluid that my arms, legs and abdomen were more than twice the normal size. I again became completely unresponsive.

Day 39 / 14^th March: my 37^th birthday! I was completely unaware of the day and its’ significance. My health had not declined any further but it definitely wasn’t improving either, it was now more than 2 weeks since I had last responded to any stimuli and my blood pressure and heart-rate were still alarmingly out of control. I was receiving several medications daily and they were concerns about the stress on my heart, the risk of a stroke or an aneurysm and blood clots. I developed ulcers on my heels and I had a laceration on my neck. My family all gathered in my room to celebrate the day with me, the only wish request was for my survival and recovery.

Day 41 / 16^th March: I developed a sinus infection from the prolonged use of the nasogastric feeding tube, the tube was removed and replaced with a gastrostomy tube (feeding tube surgically inserted directly into the stomach through the abdomen). There was a lot of uncertainty as day 41 rolled into day 56 / 31^st March except for the fact that I was responding well to being weaned off the ventilator. It was the first indication that my health was improving.

Within a few days they were even more positive signs, my heart-rate stabilized and I was now able to open my eyes although I was dazed and didn’t seem to recognize anyone. By day 63 / 07^th April I was breathing on my own and the tracheotomy tube was removed and replaced with a nasal cannula. I was attempting to speak and moving my neck.

The forward momentum continued and by day 66 / 10^th April, I was transferred from MICU. I was still dazed, partially paralyzed, swollen and prone to erratic blood pressures but I was breathing on my own and showing definite signs of improvement.

Whenever I discuss the MICU period of Dawn and GBS, family, friends and hospital staff all echo the same sentiment “you have come so far”….they were several times throughout that 8 week period where my survival was uncertain. It is surreal, you have experiences and as time passes the memories fade, it’s quite different when you have an experience and immediately afterwards you have no memories. I have spent a considerable amount of time thinking about it, there are times when I think I remember hearing the monitors beeping incessantly or felt intense pain; I have an image of a nurse cleaning my face while telling me she is preparing me for my family and I thought I had died; I think I was alert when the ophthalmologist examined me and recommended that my eyes be covered, he had a very soothing voice; there may be an instance where I was having a crisis and the doctors were discussing what action to take and in my head I was pleading with them to do nothing because I couldn’t breathe, the pain was intense and I wanted to give up…it’s impossible to know if these are vague memories, hallucinations or thoughts created after hearing the stories from others. I do know that my family were told that my survival was between me and God and we worked it out!!

***without faith, hope and trust there is no promise for the future***