Hospital number 3. ICU number 3.
By this point it was approaching 4 months since the accident, we were losing precious time as far as rehab and trying maximise neurological function were concerned. It was also becoming more and more difficult not to lose hope, but my dad did not falter. He continued to fight, and fight hard.
Once again, he started the long and difficult road to breathing on his own. This hospital was immeasurably better than the last and it was evident in his progress. While he suffered from intermittent lung infections, his drive to get himself to rehab became relentless. His positivity became infectious and hope surfaced (again). He had set a goal and he pursued it with a bravery I have never seen before, and I am guessing I am unlikely to see again. We started to get photos and short videos of him taking trips in the wheelchair to rehab and outside, practising swallowing fluids and trying to talk.
I continued with my weekly visits, and they were mostly positive every time - at least for the first few months.
I had a very honest discussion with his doctor, and this is when I learnt that his injury was complete. There was no function to be found below the injury level. In fact, due to the numerous setbacks since the accident, his injury was considered to be one level higher (C6) than it had been in the weeks after his accident. He had indeed lost function. He was not going to be able to use his fingers and his lungs were significantly damaged.
In September - 5 months, almost to the day, after his accident, he turned 54 years old. My sister flew up from Cape Town and family rallied around him. He was still positive, with intermittent low days, but who could expect anything less considering he spent the majority of his time lying flat on his back staring at a white ceiling.
I can' t remember the exact time frame now but I think it was sometime in October, my sister flew up once again to visit and for us girls to also have a spa day (a wonderful gift from our aunt and uncle). Dad was so happy to see her and although it was distressing watching him in pain as the nurse cleaned the trach site, I know they were glad to have had that time together. He was only on CPAP for a few hours a day at this point and was no longer ventilated. Hope was soaring high.
The week after, I showed up on Sunday morning for my usual visit and dad kept on mouthing 'coffee' to me and I wasn't understanding. He often asked me for beverages so I didn't take too much from it, but every time I said that I was going to leave he mouthed "don't go. coffee". As it turned out, he had been waiting for my stepmom and the physiotherapist to show up because they had planned for us to go to the coffee shop. This goes down as the best visit we had ever had.
He was put in the wheelchair and off we went to the hospital coffee shop, our favourite nurse in tow in case he needed any breathing assistance or got dizzy. He had the hugest grin on his face as we sat around the table. All of us ordered coffee but he ordered a kiddies chocolate milkshake. I looked at him and asked him how he was feeling on a scale of 1 to 10 - he smiled and mouthed '12'. He destroyed that milkshake and proclaimed it to be the best drink he had ever had. The entire coffee shop experience wasn't probably more than 15 or 20 minutes, but it imprinted on my heart. When I eventually left the hospital he thanked me for staying to experience that with him. I like to hold onto this memory, because heavens knows I had to hold onto it tight in the weeks that followed,
In the following week he developed another lung infection. It made him very tired and then he was put back onto ventilation. This was a massive blow to all of the hard work that he had put in, and became an immensely pivotal point in this journey. He was miserable and seemed to just give up. I visited again but he was depressed and slept for the majority of the visit. Historically (well in his hospital history at least), I noticed that depression always preceded something bad. This time was no different.
The next week I visited he had just had a bronchoscopy and was still sedated (bad timing on my part), so he slept through the entire visit, but now that icky feeling was back. My stomach was twisted in knots. The nurses told me how he had asked them constantly that week to just take him off the machines, he had had enough. My heart just broke for him. That night at home, I made sure that my phone was charged and the volume on loud, some part of my brain was just telling me to be ready for a call.
The next morning I woke up and relief flooded my body as I picked up my phone and saw that there were no missed calls. But this relief was short lived; my phone rang as I held it in my hand. His blood pressure had tanked in the early hours of the morning causing his heart rate to skyrocket. The medical staff were getting zero response from him. He was in a coma. I couldn't do anything but lean over the kitchen counter and sob. My whole body felt the depth of that despair. My husband had to keep reminding me to breathe.
I had already taken the morning off to watch my daughter's karate demonstration, so I just called in to take the rest of the day. I watched Layla do her karate exercises with the feeling that my heart had been filled with cement. When it was done I went straight to the hospital. Seeing him like that was heartbreaking, he was barely trying to take any breaths for himself and I just knew my dad wasn't there. I stayed with my stepmom at the hospital the entire day and we met with his doctor. We had to have the discussion about resuscitation and further medical treatment. At this point dad was on an antibiotic flown out from the USA especially for him. The doctor admitted that this was his last resort and it didn't seem to be working, after this there were no more treatment options left.
My stepmom and I struggled over the decision. We phoned the close family members to discuss what to do. I cannot even begin to explain the enormity of making potentially life ending decisions for someone you love. The guilt settles on your soul and weighs you down in a way that can't be described. It is the kind of thing you never ever get over. Signing a letter to refuse medical treatment for further infections (current treatment would remain in place for the time being), and putting an official 'do not resucitate' order on file made me feel like a traitor, as if I had given up on him. Signing that piece of paper made me feel sick to my stomach. The truth though is that we had to rest on his wishes from his entire life. How could we have known that after a lifetime of telling us what we should do in this situation that we would actually end up in this exact situation? Had he been preparing us our entire lives? I couldn't bear the guilt, it was at this point that I finally decided to start therapy to help me cope. I am still quite disgusted at the minimal support that we received from the hospital from a medical and ethical point of view when making this decision.
We did request a neuro consult at this point to find out if he had suffered any brain damage, but this request was not fulfilled until two weeks later when we, as his family, had reached breaking point and were in absolute hysterics. He went from coma to minimally responsive, but I always felt that minimally responsive was an optimistic diagnosis, it seemed more like a persistent vegetative state to me, but then again I am not a doctor so I can't really say. He was still taking some of his own breathes, they just weren't of a good quality, ventilation was keeping him alive.
Two weeks after this incident he was still not conscious and we finally got the neurologist to see him. She suspected hypoxic brain damage, but we needed an MRI, but the medical aid refused to pay for an MRI. And so my stepmom and a lawyer attended another meeting with the treating doctor and a social worker. The doctor explained the current condition, words like minimally conscious, hypoxic brain damage, poor prognosis, MRI futile, further treatment futile, lungs too badly damaged were used. Essentially my dad was dying. The question was, how long did we want to draw it out? The request we made two weeks prior was only then made official and he was to be made comfortable on morphine; with fluids, nutrition, and ventilation provided. All other medication and measures were to be stopped. Ventilation was set at the minimum that the doctor felt comfortable with, which was 60% oxygen, 10 PEEP and 16 breathes per minute and some other stats I can't remember at all now.
I drove to the hospital the next night and of all things, I sang to him - Iris by the Googoo Dolls. Then I said goodbye. We all said goodbye a lot. His eyelids would open a slightly and you could see his eyes staring blanking roving rhythmically from side to side as if watching tennis.
Over the next week his vitals remained stable, I started to visit twice a week. My marriage started to take some serious strain, my work suffered, I was basically a complete mess. And then I showed up one day and his eyes were open, and I could see that my dad was back. Unfortunately he was unable to even move his mouth and was essentially trapped. Couldn't move, couldn't talk, but was definitely conscious. This was worse than having him non-responsive. The thought of him trapped in his own mind was extremely distressing and I could see that he was distressed, and there was literally nothing that anyone could do for him. How was this happening? All treatment had been stopped and now he was doing better? We were waiting for him to die, but there he was, coming back to life.
By the time I visited him the next time he was mouthing to us again, very slowly and not very well, but he was communicating. He was also understandably exhausted. We were all floored. His recovery was beyond unexpected, the doctors were just as stumped as we were yet they still had no treatment left for him. He was never going to be able to get off of the ventilator and his autonomic reflexes where failing him on the regular.
By this time it was December - 7 months since the accident - 7 months in ICU. It had become a never ending exhausting nightmare for us, can you even imagine what it must have been like for him?
I was getting ready to go away for Christmas and was preparing myself for my last visit before the holidays. I had to leave not knowing if he would be there when I got back or not, but I stayed positive and let him know that I would be away for two weeks, but I would see him again when I got back. Something that strikes me about every visit that we had - no matter how bad it was for him and so long as he was able to communicate, every time he saw my face the first thing he would ask me is how I was doing. Like it even mattered in the context of where he was.
I once again left heavy hearted, but with the tiniest spark of hope.
He stayed stable over Christmas and my stepmom sent regular updates and pictures. Unfortunately he did completely forget why he was even in the hospital, the entire preceding 7 months wiped clean from his memory. My stepmom had the awful task of retelling him everything that had happened and watch him process it all over from the beginning again. It was devastating.
I got back home in the new year with a certain level of acceptance and peace. I had come to terms with this is how it was going to be, he was never going to make it to rehab, we would be visiting him like this forever, he would not be able to ever leave the bed or the room, but he would still be alive and that was all that mattered. Somewhere during this time the medical aid had decided that they were not going to pay the expensive ICU fees anymore and he would need to be moved to a long term care facility, so that move was in the pipeline. Dad was actually looking forward to it.
I made the first visit of the new year - on the second weekend of January. I walked into the ICU and up to his room and stopped dead in my tracks. His bed was empty. I stood still for a couple of more seconds and scanned the other beds around me, something I hadn't done in months because I could no longer get invested in other people's stories. I couldn't see him. The ICU was actually really empty that day and I had to go and find a nurse. Dad had been moved to the other isolation ward in the adjoining ICU section. I never even bothered to ask why, the nurses were being unusually unhelpful that day. I had to interrupt some poor patient's breakfast just to find out where I could find the aprons and gloves in this part of the ICU. Thankfully she was very graceful about the intrusion.
I went in to see him and his eyes popped open as soon as I walked through the door. I wished him a happy new year and then we just spoke and spoke. He insisted I get him orange juice so I had to find a nurse because I sure as hell wasn't going to be responsible for him aspirating. He had to wait 20 minutes which pissed him off, but we had a good chat during the wait. There was a certain sense of peace about him that day that had never been there before and he openly told me that he was battling to come to terms with what had happened, which he quickly followed with asking me how he could make money on the internet. He was trying to plan his life going forward. I told him that it was my birthday the next Sunday, and since my husband would be in Dubai that I would come and spend it with him and he seemed to like that idea. We laughed and laughed because I couldn't lip read the word 'nurse' and when he spelt it to me I somehow managed to spell 'arse' instead of nurse. Actual genuine silly laughing. I always clock watched while I was with him, but this time was the first time it was because I didn't want to leave just then. So I stayed a little longer than usual. In the last part of my visit he started to say he was battling to breathe, which isn't technically correct because he was ventilated, but he had a pretty mean panic attack which was solved relatively quickly with an extra shot of morphine. I thought I would panic with him, but instead I held his upper arm where I knew he could feel and I told him that everything would be okay. He turned and looked straight into my eyes and gave me a smile I hadn't seen in some time. Once he had settled I said goodbye, told him I loved him and that I would see him next week. Everything felt calm and for the first time like it would actually be okay.
That was the last time I saw him alive.
I continued with my weekly visits, and they were mostly positive every time - at least for the first few months.
I had a very honest discussion with his doctor, and this is when I learnt that his injury was complete. There was no function to be found below the injury level. In fact, due to the numerous setbacks since the accident, his injury was considered to be one level higher (C6) than it had been in the weeks after his accident. He had indeed lost function. He was not going to be able to use his fingers and his lungs were significantly damaged.
In September - 5 months, almost to the day, after his accident, he turned 54 years old. My sister flew up from Cape Town and family rallied around him. He was still positive, with intermittent low days, but who could expect anything less considering he spent the majority of his time lying flat on his back staring at a white ceiling.
I can' t remember the exact time frame now but I think it was sometime in October, my sister flew up once again to visit and for us girls to also have a spa day (a wonderful gift from our aunt and uncle). Dad was so happy to see her and although it was distressing watching him in pain as the nurse cleaned the trach site, I know they were glad to have had that time together. He was only on CPAP for a few hours a day at this point and was no longer ventilated. Hope was soaring high.
The week after, I showed up on Sunday morning for my usual visit and dad kept on mouthing 'coffee' to me and I wasn't understanding. He often asked me for beverages so I didn't take too much from it, but every time I said that I was going to leave he mouthed "don't go. coffee". As it turned out, he had been waiting for my stepmom and the physiotherapist to show up because they had planned for us to go to the coffee shop. This goes down as the best visit we had ever had.
He was put in the wheelchair and off we went to the hospital coffee shop, our favourite nurse in tow in case he needed any breathing assistance or got dizzy. He had the hugest grin on his face as we sat around the table. All of us ordered coffee but he ordered a kiddies chocolate milkshake. I looked at him and asked him how he was feeling on a scale of 1 to 10 - he smiled and mouthed '12'. He destroyed that milkshake and proclaimed it to be the best drink he had ever had. The entire coffee shop experience wasn't probably more than 15 or 20 minutes, but it imprinted on my heart. When I eventually left the hospital he thanked me for staying to experience that with him. I like to hold onto this memory, because heavens knows I had to hold onto it tight in the weeks that followed,
In the following week he developed another lung infection. It made him very tired and then he was put back onto ventilation. This was a massive blow to all of the hard work that he had put in, and became an immensely pivotal point in this journey. He was miserable and seemed to just give up. I visited again but he was depressed and slept for the majority of the visit. Historically (well in his hospital history at least), I noticed that depression always preceded something bad. This time was no different.
The next week I visited he had just had a bronchoscopy and was still sedated (bad timing on my part), so he slept through the entire visit, but now that icky feeling was back. My stomach was twisted in knots. The nurses told me how he had asked them constantly that week to just take him off the machines, he had had enough. My heart just broke for him. That night at home, I made sure that my phone was charged and the volume on loud, some part of my brain was just telling me to be ready for a call.
The next morning I woke up and relief flooded my body as I picked up my phone and saw that there were no missed calls. But this relief was short lived; my phone rang as I held it in my hand. His blood pressure had tanked in the early hours of the morning causing his heart rate to skyrocket. The medical staff were getting zero response from him. He was in a coma. I couldn't do anything but lean over the kitchen counter and sob. My whole body felt the depth of that despair. My husband had to keep reminding me to breathe.
I had already taken the morning off to watch my daughter's karate demonstration, so I just called in to take the rest of the day. I watched Layla do her karate exercises with the feeling that my heart had been filled with cement. When it was done I went straight to the hospital. Seeing him like that was heartbreaking, he was barely trying to take any breaths for himself and I just knew my dad wasn't there. I stayed with my stepmom at the hospital the entire day and we met with his doctor. We had to have the discussion about resuscitation and further medical treatment. At this point dad was on an antibiotic flown out from the USA especially for him. The doctor admitted that this was his last resort and it didn't seem to be working, after this there were no more treatment options left.
My stepmom and I struggled over the decision. We phoned the close family members to discuss what to do. I cannot even begin to explain the enormity of making potentially life ending decisions for someone you love. The guilt settles on your soul and weighs you down in a way that can't be described. It is the kind of thing you never ever get over. Signing a letter to refuse medical treatment for further infections (current treatment would remain in place for the time being), and putting an official 'do not resucitate' order on file made me feel like a traitor, as if I had given up on him. Signing that piece of paper made me feel sick to my stomach. The truth though is that we had to rest on his wishes from his entire life. How could we have known that after a lifetime of telling us what we should do in this situation that we would actually end up in this exact situation? Had he been preparing us our entire lives? I couldn't bear the guilt, it was at this point that I finally decided to start therapy to help me cope. I am still quite disgusted at the minimal support that we received from the hospital from a medical and ethical point of view when making this decision.
We did request a neuro consult at this point to find out if he had suffered any brain damage, but this request was not fulfilled until two weeks later when we, as his family, had reached breaking point and were in absolute hysterics. He went from coma to minimally responsive, but I always felt that minimally responsive was an optimistic diagnosis, it seemed more like a persistent vegetative state to me, but then again I am not a doctor so I can't really say. He was still taking some of his own breathes, they just weren't of a good quality, ventilation was keeping him alive.
Two weeks after this incident he was still not conscious and we finally got the neurologist to see him. She suspected hypoxic brain damage, but we needed an MRI, but the medical aid refused to pay for an MRI. And so my stepmom and a lawyer attended another meeting with the treating doctor and a social worker. The doctor explained the current condition, words like minimally conscious, hypoxic brain damage, poor prognosis, MRI futile, further treatment futile, lungs too badly damaged were used. Essentially my dad was dying. The question was, how long did we want to draw it out? The request we made two weeks prior was only then made official and he was to be made comfortable on morphine; with fluids, nutrition, and ventilation provided. All other medication and measures were to be stopped. Ventilation was set at the minimum that the doctor felt comfortable with, which was 60% oxygen, 10 PEEP and 16 breathes per minute and some other stats I can't remember at all now.
I drove to the hospital the next night and of all things, I sang to him - Iris by the Googoo Dolls. Then I said goodbye. We all said goodbye a lot. His eyelids would open a slightly and you could see his eyes staring blanking roving rhythmically from side to side as if watching tennis.
Over the next week his vitals remained stable, I started to visit twice a week. My marriage started to take some serious strain, my work suffered, I was basically a complete mess. And then I showed up one day and his eyes were open, and I could see that my dad was back. Unfortunately he was unable to even move his mouth and was essentially trapped. Couldn't move, couldn't talk, but was definitely conscious. This was worse than having him non-responsive. The thought of him trapped in his own mind was extremely distressing and I could see that he was distressed, and there was literally nothing that anyone could do for him. How was this happening? All treatment had been stopped and now he was doing better? We were waiting for him to die, but there he was, coming back to life.
By the time I visited him the next time he was mouthing to us again, very slowly and not very well, but he was communicating. He was also understandably exhausted. We were all floored. His recovery was beyond unexpected, the doctors were just as stumped as we were yet they still had no treatment left for him. He was never going to be able to get off of the ventilator and his autonomic reflexes where failing him on the regular.
By this time it was December - 7 months since the accident - 7 months in ICU. It had become a never ending exhausting nightmare for us, can you even imagine what it must have been like for him?
I was getting ready to go away for Christmas and was preparing myself for my last visit before the holidays. I had to leave not knowing if he would be there when I got back or not, but I stayed positive and let him know that I would be away for two weeks, but I would see him again when I got back. Something that strikes me about every visit that we had - no matter how bad it was for him and so long as he was able to communicate, every time he saw my face the first thing he would ask me is how I was doing. Like it even mattered in the context of where he was.
I once again left heavy hearted, but with the tiniest spark of hope.
He stayed stable over Christmas and my stepmom sent regular updates and pictures. Unfortunately he did completely forget why he was even in the hospital, the entire preceding 7 months wiped clean from his memory. My stepmom had the awful task of retelling him everything that had happened and watch him process it all over from the beginning again. It was devastating.
I got back home in the new year with a certain level of acceptance and peace. I had come to terms with this is how it was going to be, he was never going to make it to rehab, we would be visiting him like this forever, he would not be able to ever leave the bed or the room, but he would still be alive and that was all that mattered. Somewhere during this time the medical aid had decided that they were not going to pay the expensive ICU fees anymore and he would need to be moved to a long term care facility, so that move was in the pipeline. Dad was actually looking forward to it.
I made the first visit of the new year - on the second weekend of January. I walked into the ICU and up to his room and stopped dead in my tracks. His bed was empty. I stood still for a couple of more seconds and scanned the other beds around me, something I hadn't done in months because I could no longer get invested in other people's stories. I couldn't see him. The ICU was actually really empty that day and I had to go and find a nurse. Dad had been moved to the other isolation ward in the adjoining ICU section. I never even bothered to ask why, the nurses were being unusually unhelpful that day. I had to interrupt some poor patient's breakfast just to find out where I could find the aprons and gloves in this part of the ICU. Thankfully she was very graceful about the intrusion.
I went in to see him and his eyes popped open as soon as I walked through the door. I wished him a happy new year and then we just spoke and spoke. He insisted I get him orange juice so I had to find a nurse because I sure as hell wasn't going to be responsible for him aspirating. He had to wait 20 minutes which pissed him off, but we had a good chat during the wait. There was a certain sense of peace about him that day that had never been there before and he openly told me that he was battling to come to terms with what had happened, which he quickly followed with asking me how he could make money on the internet. He was trying to plan his life going forward. I told him that it was my birthday the next Sunday, and since my husband would be in Dubai that I would come and spend it with him and he seemed to like that idea. We laughed and laughed because I couldn't lip read the word 'nurse' and when he spelt it to me I somehow managed to spell 'arse' instead of nurse. Actual genuine silly laughing. I always clock watched while I was with him, but this time was the first time it was because I didn't want to leave just then. So I stayed a little longer than usual. In the last part of my visit he started to say he was battling to breathe, which isn't technically correct because he was ventilated, but he had a pretty mean panic attack which was solved relatively quickly with an extra shot of morphine. I thought I would panic with him, but instead I held his upper arm where I knew he could feel and I told him that everything would be okay. He turned and looked straight into my eyes and gave me a smile I hadn't seen in some time. Once he had settled I said goodbye, told him I loved him and that I would see him next week. Everything felt calm and for the first time like it would actually be okay.
That was the last time I saw him alive.
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