A fresh perspective

The past three weeks have been interesting to say the least. Perhaps nothing extraordinary to the eyes of an outsider but within this little bubble which I call my life, there have been lessons and learning and growing at a rate at which I have never experienced before. Probably because even though I like to think I'm cool with change and can embrace it, I am actually extremely change resistant.

I am not going to say that everything is all fine and perfect now, in fact far from it, I still have the same stresses and problems that I had before and that hasn't changed, the difference now is how I react to it and it has made all the difference to my peace of mind. I have finally grasped concepts that I have never even been able to consider before.

Patience has become a friend - and it took a moment of impatience, which resulted in an over reaction, which in turn turned a pretty much non-existent problem into a big ongoing problem, to finally learn my lesson in patience. It was a Sunday afternoon and we had a 'water leak' in the driveway. Water was coming up through the paving in an area about the size of a brick. It wasn't gushing nor was there a fountain, there was just a pool of water originating from underground. For some unknown reason I panicked and decided to act immediately. A plumber was called and he proceeded to dig up the driveway for a solid 4 hours - with absolutely no resolution. Fun times! What had been a small pool of water was now a 2m x 5m water filled hole in the paving. Eventually it got too dark to continue digging and I called it off and got a second plumber to come through the next morning. And guess what, it was just ground water from all the rain we had been having. Nothing needed to be done to fix it because it would eventually dry up by itself. If I had just left the issue alone it would have resolved itself in a few days without any input or interference from anyone. Instead I created a problem where there was none and now I have the stress of having to fix it. And just to drive the point home a little further it has become something that is taking weeks and weeks to fix. Just being patient would have literally saved me weeks of stress.

Conversely I have also figured out how to actually identify an emergency from a non-emergency. For me, for pretty much my entire life, I have determined every problem to be an emergency. This is the problem with being an anxious person, I need to react immediately or else I don't feel like I am doing my best. This means I tend to over react and create drama and problems for myself (see above for proof of this). A few weeks ago we had to deal with a bona fide emergency (ironically coinciding with my great non-emergency above), Layla woke up at midnight wheezing and barely able to breathe. We had to rush her to the hospital where she was given adrenaline and neubilised 3 times before she was able to breathe normally again. It was one of the most terrifying moments of my life, (although to be fair I have had quite a few in the past year) and it created a stark contrast in my mind as to what I need to react to swiftly and what I don't. Here is the thing, there are very few moments that require immediate and urgent reaction. Everything else can actually wait.

Once this finally sunk in I felt all of the intense stress and anxiety I had been experiencing for just about forever now, just melt away. So long as no one is going to die, get sick or get hurt from not reacting immediately then I am allowed to take some time to come up with the best solution to the problem first before reacting. I am the type of person that can thrive on stress to a point and then when it all becomes too much I become paralysed and unable to react appropriately at all (it is embarrassing how I react at times). I have been in this state of paralysis for almost 7 years now which explains why I haven't bothered to look after myself. I haven't been living, just merely surviving from moment to moment. Just surviving isn't a bad thing by any means, our bodies were designed for it, but only for short periods at a time. Periodic stress is actually good for you, constant stress most definitely isn't and since dropping the unnecessary stress for those things that are out of my control I have freed up brain capacity to focus on more important things, like spending quality time with my family where my mind is actually present, or finally taking on some projects around the house, or maybe (just maybe) even finally looking after myself and my needs.

Making this change in my way of thinking has made me calmer, happier, and more motivated than I think I have ever been before. I know that this won't eliminate the stress in my life, and at times, especially with extreme stress, I am likely to go back to my old ways of thinking although I hope that I can always eventually come back to how I am thinking and feeling now.

This past year has been difficult to say the least, but what I have learnt has been priceless and for that I am forever grateful.

The day time stood still - Part 7

Once again, things seemed to be going well, relatively speaking that is. The doctors had visited the long term care facility and deemed it suitable for dad to live out the rest of his days, however long that may be (no one could predict), and we were just waiting for the caregivers to visit dad to confirm that they could manage his conditions. So when I say Friday the 13th of January 2017 came out of nowhere, while I can see you thinking how could they not expect this? - I really do mean it. It took us by surprise.

Somewhere around 9am, while at work checking a delivery of block mounted pictures I had just received, I got a call from my stepmom, she sounded calm, but told me that the hospital had called for her urgently because dad's heart rate had slowed dramatically and his oxygen saturation was in the 50's and she would call me once she got to the hospital and knew what was going on. I didn't freak out, we had done this so many times before and he had always been okay. I refused to cry or assign any major significance to this event until I knew more. I just repeated to myself over and over we have been here before and we have always made it through.

However, if I am honest, as I pressed end call on my phone I knew what was coming. At around 9.10am my nose started to bleed profusely. My nose never bleeds for no good reason - that is my husband and daughters thing. As I wiped the blood from my top lip I then knew deep down that this was it. The call didn't come long after that and I hadn't realised how two words, he's gone, could literally bring me to my knees. The sobs emanated from the very depths of my soul. I don't remember the rest of the phone call, but when I finally took some notice of my surroundings, I was on my hands and knees on the floor of my office, my face was drenched with tears and feeling like my heart had been ripped in two.

Dad left this world at 9.10am on Friday the 13th of January 2017. His heart just slowed down until it eventually stopped beating. He had decided it was time.

He had given us 8 months of the bravest and toughest fight of his life, possibly the greatest gift he could ever have given because while it was almost impossible to face at times, it forced us to right old wrongs, forgive and then love without all of the hurt that used to taint it. Parents are human, children are human and we all  make mistakes and many of them and here we were given the most precious gift of acceptance and closure. Nothing was left unsaid and I realise now that this is a luxury denied to many and I am so grateful to have received it.

Today, I am still struggling to come to terms with what has happened. There are times when I am in disbelief that anything I have written in this blog could even be true. How does all of this even happen outside of a movie? 

But it was true, I lived it, I breathed it and somehow... I survived it.

The Rollercoaster - Part 6

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.

'That' Hospital - Part 5

And so there he was, in another hospital, starting over from the beginning again.

The first time I saw him there I couldn't find him and the staff were the most unhelpful people I had ever had the displeasure of interacting with - which is saying something because I generally found doctors, and on a rare occasion a few nurses, unhelpful - but at this place it seems like disdain and unhelpfulness was part of their training program.

At least when I saw him this time, he was alert, unhappy to have taken such a far step backwards, but as communicative as he could be considering he couldn't talk. I still hadn't developed decent lip reading skills though (spoiler alert - I never did). My husband was with me this time, and when he came in he said the usual hi and how are you and my dad instantly [ut on that bravado that only men are capable of around other males. I don't remember his exact words, but I think he mouthed back something like 'I'm all good'. Yes, right. All good.

This hospital gave me the worst of icky feelings, the staff all but vanished during the visiting hour (I didn't like this either, we could come and go almost as we pleased at the previous hospital, here there were 2 one hour periods a day you could visit and being a much bigger hospital it was overwhelmingly busy). I just knew straight away that I wasn't going to like this place. It had horror movie mental hospital green coloured walls, construction going on, and it just felt off. The equipment was ancient and I hated that I didn't know how to read their ventilator settings. I had gotten awfully used to and somewhat comfortable at the old hospital. I never got comfortable at this hospital. Maybe because they were so lax about visitors washing their hands and wearing gloves, it just didn't seem right. I was sure he had accidentally been sent to a public hospital instead of a private one, but alas not quite the case. To be perfectly honest, if that is a private hospital, I feel the deepest despair just thinking about what an actual public hospital must be like. I feel so appreciative and grateful for being able to afford medical aid.

I think I did about 7 or 8 visits to this hospital, that was about how many weeks he stayed there. The ups and downs seemed to get more severe here, or maybe we just finally knew better. The doctors wouldn't arrange neuro physio for him in ICU, even though they had 'one of the best' neuro rehabs just a few floors down. Fucking ridiculous if you ask me, so he didn't progress quite like we had seen before.

My second visit there I couldn't find him (again). There was always that moment of sheer panic in those situations. He had been moved one bed over, however I didn't see him because this bed happened to be in an isolation room. At the previous hospital in Nelspruit I had very morbidly named the isolation ward in their ICU the dying box. 1. Because I obviously have no tact (to be fair I didn't say it out loud to anyone that wasn;t a family member) and 2. Because we never saw anyone come out of there. Now this was not necessarily true, but we hadn't to date witnessed anyone come out of there, but we had seen new people go in. In my dad's case it certainly wasn't true because he did leave, I won't talk about how it was only so that he could go into another isolation room at a different hospital just yet.

I have blocked out a lot of the memories from this hospital so I can't remember too many of the emotions and finer details, it just wasn't a good time, but some significant events happened here.

I met hallucinating dad for the first time. ICU syndrome it was called. He had this in Nelspruit as well when he was telling us about his stashed millions and where to find them, but that was kind of endearing, the hallucinations became more severe and definitely more sobering while he was here. It was utterly insane. I never knew whether to indulge the ridiculous hallucinations, like walking out of the room to fetch his welding gloves so that he could help the old man being mauled by the bear. My stepmom and I ducked from bats, hid from bears, got on the boat (bed) to get away from crocodiles. And the one day he was absolutely insistent that someone was out to hurt me and my sister, he was incredibly worried. The only one I could get on board with was to help him try and find the R 74 million blue diamond he claims he had procured who knows where.

It was here that he found and gave his life over to God, an achievement which goes beyond the miraculous. He also decided that he did in fact now want to be recusitated afterall, and he was - with cpr - twice.

He became afraid of breathing without the ventilator and the doctors were asked not to tell him when they were turning down the settings because his panic attacks alone would set him back. And he did have many set backs. He started to get lung infections more regularly and they got more and more drug resistant every time. He didn't really make much progress neurologically.

One particularly bad day I wasn't myself and I struggled to communicate with him. Luckily I wasn't the only one visiting so I held back closer to the door. It was that day that I watched in sheer horroe, through the glass partition between his isolation room and the one next to him, as a man's heart flatlined 4 times in the space of 10-15 minutes. No curtains were closed, nothing, I just watched it all happen, and let me tell you it is SO much calmer than Grey's Anatomy would have you believe. I'm just impressed there were staff present during visiting hour to assist him. Two weeks later this man went home. Try reconcile that in your mind. I saw him 'die' over and over, his condition was particularly horrific but I don't feel comfortable discussing it here, and two weeks later he was ready to go home - yet my dad after now 3 months was no where near ready for rehab never mind home.

Somehow, dad did start to get better at breathing again though, and that word 'rehab' was starting to be thrown around. I didn't get my hopes up this time. What had happened though was that we had all become increasingly disastified with this hospital. My dad would tell me how horrible the nursing staff were, but I mustn't complain or else they would make it worse for him. For once when he said this I actually believed him. My stepmom visited the rehab downstairs and she wasn't impressed. She then went to another one at a hospital about 15 minutes away and the choice was clear, she immediately made a request to the medical aid to have him transferred again. It was a long shot, by this point the medical aid had already paid millions in claims for my dad so why should they move him, but by some miracle they agreed. Grateful doesn't even come close to how we felt.

My last visit to this hospital turned out to be one of my favourites with my dad. He was in an amazing mood. He was 'singing' along to the songs on the radio, and we generally just had a great, easy visit. I think he was as happy as we were that he was moving, and also that it was to go to rehab. Yay progress!

The receiving hospital was at least smarter than this one. They had no plans to receive him directly into the rehab. He would be admitted to ICU for 5 days for assessment before placing him in the rehab unit and it was definitely one of those decisions that was for the best.

Because, you guessed it, the guy that was ready for rehab, the one that was once again doing so well, the one that only had a 20 minute ambulance ride to the new hospital, went into respiratory failure on the drive. Again. It was the 31st of August. Three and half months since the accident and he was back on full ventilation again. 

Square one.

Waiting for Rehab - Part 4

We didn't go back to Nelspruit again.

Although he was still on the ventilator, he steadily got better and better, and as he got better our focus shifted from tentative, cautious hope, to the mindset of 'let's get him home'.

Getting him home required that he was breathing on his own, which seemed like the most mammoth task that not one of us, with the exception of my dad, could do anything about. Helpless doesn't even begin to describe it.

He progressed steadily day by day. There were dark days, darker than I can even care to imagine as he faced a life without the use of the majority of his body, possibly even including his hands. I have been too scared to even try to imagine what it must have felt like to face that reality, and I know whatever I can imagine would fall so grossly short of what it actually felt like for him. There is just no way to know.

I would try to phone every other day, other than being nearly impossible to talk to him because he was always busy with physio, doctor visits, sleeping or a bath, it was just the weirdest sensation to talk into a phone and have no one talking back. The nurse would hold the phone to his ear and at the end of the 'conversation' she would say that he was 'talking back' but without the evidence of sound, it could have all been a lie.

I would say the same thing every time, "hang in there dad", "keep working hard dad" "we'll get you home as soon as we can dad", "I love you dad".

Then one day I called and started my very familiar monologue and was stopped in my tracks by a very rough and raspy voice answering me back. My heart skipped a beat and the tears started to stream down my face (I'm not sure I've ever cried from joy before), hearing his voice after all that time was one of the most magical sounds. He had been fitted with a cuffless trach which allowed air to pass through his vocal chords and so for a short time we got signs of life from the other end of the phone.

We started to see a light at the end of the tunnel, an actual, real live, potential transfer date to what was supposedly one of the best neuro/spinal rehab centres in the province (country? I don't know). 

Finally, right at the end of June he was breathing on his own and had been taken out of ICU and put in a high care ward. He was being taken outside in a wheelchair to see the sunshine for the first time in well over a month. He had started to eat small amounts of food and take liquids by mouth. And after being pushed back a couple of times the transfer date was set.

A few days before his scheduled transfer he even had his trach removed, what freedom he must have felt to have that flippen tube out of his throat. This was amazing. To go from being told we should consider letting him go to about to get him home? Incredible.

And then the day before his transfer the request came through to have the trach put back in because he was struggling to clear his lungs on his own. I wish we had realised what that actually meant at the time. I wish the doctors had taken bigger notice of this little step backwards, it was a sign. That night he had the trach reinserted and then on Monday 4 July 2016, roughly 7 weeks after his accident, he was put back in the ambulance for the long trip 'home'.

We were so excited to be getting him into the major recovery part of this journey.

However, as subtly indicated the night before and despite the confidence that the doctors had in his progress up until that point, rehab was just not to be.

We had been in high spirits that day, waiting for news of his safe arrival at rehab in Pretoria. Then I got the call (there were so many of these calls) just after I walked in the door getting home that evening. Instead of being admitted to rehab, he had been admitted to ICU and put back on full mechanical ventilation. He had gone into respiratory failure on the drive. I would have hated to have been a paramedic in that ambulance that day - can you imagine a 4 hour drive not knowing if you could keep your patient alive long enough to get to your destination? My heart sunk so low. This was not even close to we had been anticipating. I had been dreaming about visiting him in rehab, watching him getting stronger and more capable every week. I felt stupid for even thinking about it. Never get ahead of yourself is what I always try to tell myself (FYI I never listen) and my hope lay in tatters, crushed beyond recognition, in front of me at the dining room table I was sitting at when I took the call.

Someone please tell me how I was supposed to get up from that table and carry on with cooking dinner, getting my kid bathed and into bed like everything was normal? How were any of us, most importantly my dad, supposed to try and understand the purpose of what was happening here? So help me if anyone ever says to me "everything happens for a reason" again. Sometimes there is no reason, sometimes things just go to shit.

I thought I would never have to see the ICU again, never have to put on the stupid plastic apron and the sweaty latex gloves again, and now, now I would be going back to the ICU just in a different hospital, and this hospital, oh my word, this hospital - I will never have anything good to say about it.

Back to Nelspruit - Part 3

So just to back up a little bit, it is difficult to keep track the flow of how everything happened, the accident was on 17 May and he had surgery for the tracheostomy on 28 May - so we're only 11 days into this story. 

As it goes the tracheostomy was successful although that night his heart did that rate dropping thing again and he developed a minor infection, you know just to keep everyone on their toes. Relatively speaking though things started to improve. He was taking more breaths in his own than the ventilator was giving, settings were being reduced, he was awake and actively participating in his physio and Nadine was doing her best to become an expert lip reader. With a tracheostomy air does not pass through the vocal chords which means no sound is made when speaking. We all had to learn to lip read and to be honest, I personally never got particularly good at it during the entire process which was equally frustrating and amusing. 

Then on the 30th of May his respiration rate started to increase, but not in the good kind of way. By that point he has asked for his daughters so Sam and I were already starting to think about making another trip to see him, but not exactly with any sort of urgency. Life had other plans. That day things started to go south very quickly (a phenomenon we named the ICU rollercoaster) and we were asked to please come through to the hospital, as in as soon as possible. This is never a good sign is it? Once again, panic set in, except this time we were less oblivious to the seriousness of the situation so we had an added feeling of dread. Flights were booked, airport pick ups were sorted and the next morning we made the 4 hour drive once again, thinking in the back of our minds that it was entirely possible that we were going there to say goodbye. This was now my 4th trip to Nelspruit in a month, ironically enough, having never set foot in Nelspruit before, we went on a small family weekend away to Nelspruit at the beginning of the month, just a little over a week before the accident happened. At the time I had enjoyed that little holiday and Nelspruit. Now I started to harbour some resentment towards it.

We arrived a little after lunch time, dad was once again heavily sedated and with his ventilator settings maximised. He had stabilised by this point. Critical but stable. The lower part (lobe? I don't know what it is called?) of his left lung had collapsed and the doctor believed that he had emboli on his lungs. The problem is that they couldn't really give him medication for that because it might cause a clot from the spinal surgery which could potentially result in a stroke. Things were complicated. I struggle to explain the feelings that came with news like this, but mostly I struggle to remember. Bad memory or self protection, I don't know?

Later that day we were standing over my dad's bed chatting, he was still fast asleep. We liked to have normal conversations over him because before we had often gotten a smile or chuckle out of him even if he hadn't opened his eyes. It was the closest thing we had to normal.

While I was busy tripping over the drip stand or doing something else clumsy or silly. The cardiologist came over and looked at us with that look, I can't really describe it, I don't know if it is pity and I am fairly certain it is not compassion, but there is definitely this look that doctors give you when there is pretty much jack shit that they can do for you. Along with 'the look' came his abrupt announcement that perhaps we should start to consider letting him go. All 3 of us looked at him aghast. WTF did he just say over my dad's sleeping body - the body we had been assured could hear EVERYTHING we said while it was unconscious. I was nearest the head of the bed and I found myself almost immediately and subconsciously blocking my dad's ears. I didn't even realise until Nadine asked him to discuss his opinion with us away from the bed that I was doing it. Nadine started to cry, I started to cry and my sister moved into 'let's find shit out and get everything sorted' mode. We all took turns to be the strong one in rotation it seemed, but she was best with holding us together at these big moments.

The cardiologist confirmed that we did need to discuss everything with the intensivist since she had become his primary treating doctor. You know the one that was impossible to talk to and always had her bag, ready to run? Somehow, through Sam's sheer determination and will we got an appointment at midday with the intensivist. We also for the first (and only) time got a social worker to visit with us and counsel us. This was difficult not only because of the sort of discussion we were required to have, but also because Sam and I were supposed to be leaving at 12 and this meant changing flights, etc. It seems petty now, but even tiniest action requires maximum effort when you are faced with such a monumental discussion, so it is something that I have remembered. I called my uncle in tears and told him, very dramatically might I add, that he needed to come to Nelspruit because dad had been saying there was something he wanted to tell him, but he wouldn't tell it to us to pass on to him.

Dr on-the-run showed up on time at least and she even sat down, albeit I'm pretty sure with her bag still on her shoulder. She placed my dad on a 5 out of 10 as to which way this whole thing could tip - so yes, your usual non-committal doctor stuff and then she asked us for one more try to wean him from the ventilator, she wasn't comfortable saying that she had done everything she could do to help him just yet. And so she implemented extra after hours physio, which I am sure cost the medical aid must of loved (actually I dealt with them a lot in the beginning so I know they did not), and he started to get physio every few hours to help clear his lungs.

So there we were.

I kitted back up into what felt like my 112th plastic apron and pair of latex gloves, I laugh at how badly used to fumble putting those gloves on and by now it is the most natural thing in the world to me. And then in I went back into the ICU to say goodbye. I put my earphones into his ears and hooked up my ipod and played Zoe Jane by Staind for him (which is not exactly allowed, but under the circumstances fuck it, right?) and then Sam and I said goodbye to him, wondering if it would be the last goodbye. To be fair we felt this with every goodbye for most of this experience.

Just before we left we watched his heart rate dip into the mid-40s and he was taking hardly any breaths on his own, the ventilator was doing it all. It was if he had just given up and I was sure it was going to be all over soon.

Well I was wrong. Apparently all my dad needed to hear was that we might switch him off to get him fighting again.

The next morning, back at home, and with my uncle having rushed through to Nelspruit, my dad proceeded to wake up and be the most alert and responsive he had been since the beginning. It was an unbelievable turnaround and made me look like a complete fool for having called my uncle sobbing about dad's impending death just the day before. But that is the life in the ICU for you, and a happy (well somewhat less distraught) fool I was.

Was this the miracle we had been waiting for?

Waking Up - Part 2

On the day of my dad's surgery my uncle, sister and ex-stepbrother drove out to the scene of the accident to see if they could figure out what had happened. I think we needed it for potential claims, but probably also to get a sense of understanding of why it was that we were even there. I am not going to get into too much detail on the accident theory here, but it was a God given miracle that he was a) found and b) even alive. I stayed behind at the hospital with my aunt and stepmom and drank a ridiculous amount of coffee.

His surgery was on the Saturday morning, not a popular surgery morning so at least he was the first (and probably only) patient on the list. The surgery lasted about 4-5 hours and dad was to remain heavily sedated for a couple of days. We had hope that once the swelling from the surgery and immediate injury had gone down that the pressure on his spinal cord would reduce and we might, just might, get some sort of motor or sensory response from him. It seems impossible now, but it was that kind of hope that got us through.

On the Sunday, everyone needed to leave, lives continue, and we lived so far away from Nelspruit. The intensivist told us that they would start to wake him up on Monday. Monday. The only day since he had been admitted that no one would be there. That was a gut wrenching realisation. Imagine waking up, unable to move, unable to talk, and thinking you had been abandoned. I decided to drive back on the Monday morning, I just couldn't bear the thought of him waking up alone.

And so I drive home, drop Sam at the airport, spend the night with my family that I hadn't seen in 4 days and then get up the next morning ready to drive back. Being completely alone for the first time since it had all happened, a lot of crying happened on that drive.

I went directly to the hospital opened the doors to the ICU to see his curtains closed (as usual) and then planted myself in the now ever familiar family room. The neuro physio came in to see me. She told me that he was very tired as it was to be expected, but was doing well. The first six weeks to six months of rehab would be critical in terms of recovering any function that is actually able to be recovered, but nothing would be set in stone until 2 years had passed. She also said that he definitely had bicep and tricep movement which was great, but we had no way to know if his hands would function until he was more awake and able to participate. The bundle of nerves, C8, responsible for hand and finger function lie right inbetween vertebrae T1 and C7 - exactly where my dad's injury had occurred. I had started to accept paraplegia, but not being able to use his hands? That wasn't even a thought until then, but you know what, hope still remained

I don't remember seeing him that first time to be honest, but I do remember that evening. Vividly. He was awake, and holy shit was he fighting. The tears streamed down the sides of his face and he relentlessly bit at that intubation tube trying to get it out of his throat. He had moved his head so much that his neck and back brace had ridden up onto his chin. When he saw me I looked into the face of fear and despair. He just mouthed at me over and over "help me". 

It was utterly devastating, but I couldn't let him see me lose composure. I tried to explain what had happened to him as gently as possible, I begged him to stop fighting, because he was actually doing really well on the ventilator and the nurse was hoping that they would be able to extubate him the next day. I tried to give him hope, but I could see in his eyes that he was having none of it. 

Shift change happened and the sister in charge for the evening very rudely asked me to leave because his blood pressure was too high and somehow that was apparently my fault... not him waking up to find out his worst nightmare was real.

I told him I was going to go, said goodbye, and gave him a kiss and it was the first time I saw a smile. So he didn't actually want me there. I remember ripping off the plastic apron and latex gloves (that you need to put on every time you walk into the ICU) and violently throwing them in the waste bin and as I pushed the door open hot angry tears began to run down my face. I don't know why I was so angry, but I was. I nearly ran down that passage to get out of the hospital. This didn't feel fair.

I cried waiting to get some food, I cried checking into the road lodge, I cried eating my dinner and sitting in that shoebox of a room. Most of all though I felt so incredibly angry and I had an icky gut feeling that would just not leave.

I didn't sleep well that night, but I made sure to get up very early the next morning. I wanted to be waiting outside that door as the doctors finished rounds so that I could ask some questions. If you want to speak directly to a doctor this was pretty much your only opportunity.

I sat alone in the family room, drinking coffee, again, when the intensivist popped her head in and saw me sitting there. This woman always had her handbag over her shoulder looking like she was about to bolt in the opposite direction, even when talking to you. She explained to me that my dad's heart had stopped beating in the night, but the ER doctor was called and he was okay, and the cardiologist was looking at him now. Critical but stable - there is a phrase we heard that a lot. He was back to being heavily sedated and his ventilation settings, which had been on the minimum just the night before, had been dialled right back up. He was going to be difficult to wean off of the ventilator she said (guys, please don't smoke, you have no idea how much of a difference being healthy makes to a recovery of this kind). I forcibly reminded her that my dad did not want to be resuscitated. Her eyes looked like they were going to fall out of her head. She pulled me into the ICU (handbag still over her shoulder with her about to run in the opposite direction), there were two doctors and about three nurses standing around the bed and she made me tell all of them right there that he was not to be resuscitated. Do you have any idea how much guilt and pressure comes with being the person to say those words, right over the person that you love? Someone wrote it down on his chart, which was essentially useless because they started a new chart every day and they never wrote it on any subsequent charts that I am aware of, but anyway.

The head sister came and sat with me later to tell me that his heart never stopped, it just slowed dramatically, we will never know what actually happened but it doesn't matter now does it? Being naive and ever hopeful I just reminded her again that he didn't want to be on life support, to which she gently reminded me that he already was. The guilt started to seep in.

I stood with dad for a while, he just slept. What I would have given for a touch of morphine and dormicum for myself at that point. I complained to the neurologist about the brace that kept on riding up over his chin and he gave the go ahead for it to be removed since the surgery had already been done. Now he just had the abdominal brace to assist his diapraghm in the breathing process, and of course the feeding tube, the central port, the intubation tube, the blood transfusion, the ventilator, the vac therapy machine for his foot, the monitors and all that goddamn beeping. Who knew it would take all of those machines and equipment to keep one person alive.

I decided to leave for home that day since my stepmom would be on her way back, and dad was going to be knocked out for the day at least. I cried the whole drive back.

Not long after this I believe was when they decided to start to wake him up again, if I remember correctly it went a little better this time. My stepmom was with him at this point and he was just as stubborn about trying to bite the intubation tube out. He was given a mouth guard to stop him from chewing on the tube which he would just spit out and then get to work on the intubation tube again.

Based on everything that had happened, and that was happening, we wanted to get his unequivocal opinion on what he actually wanted done as far as resuscitation and life support measures are concerned. I can tell you now. that if you are at this point, it is already too late to talk about such things, but we had become so afraid about doing the wrong thing, afterall this wasn't our life to make decisions with and because only my stepmom was there, the responsibility to try and find out fell on her, which is something I will forever regret because it was crazy stressful and completely unfair on her. Also dad was in no position to answer any such questions because he was drugged and in pain and distress. I wish I could take this all back. It never got to the point of asking, but he did tell Nadine that he did not want to die.

Somewhere around this time the decision was made for him to get a tracheostomy (incision in the throat and insert the tube directly into his trachea), this would make him more comfortable without having the tube going in his mouth and down his throat and also it is apparently not advisable to have the intubation tube for too long.

With having the assisted breathing, the airflow to the lungs bypasses your nose and mouth, the place where the a lot of germs are caught up so that they don't make it to your lungs and cause infection. By using these tubes we were keeping him alive, but had opened up an easy access highway for germs to get to the lungs and so he was tested daily for infection and chest x-rayed regularly.

This breathing thing was obviously going to be a challenge. If only we knew how much.