'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.

Outside of the ER (far outside) - Part 1

On Tuesday the 17th of May last year my phone rang at just a little bit past that time at night where you are comfortable having your phone ring. My stomach dropped a little as I looked at my phone, and then it just about fell through the bottom of my feet when I saw it was my stepmom. Thinking of my dad, the the motor bike riding, sky diving, shark diving, risk taking guy made this call, at this time, to suddenly feel so much worse. I paused and took a deep breath before answering.

I only remember the key words out of that conversation: accident. motorbike. hospital. nelspruit. can't move. possible spine injury. spinal shock. on my way. will let you know. I think I asked questions, I can't be sure now.

Heart pause.

Then tears.

I tried to carry on watching whatever it was that we were watching on tv at the time but I completely blanked out.

My biggest mistake that night was to assume that when you have an accident of this magnitude that you either die or that you get lucky and make a full recovery. Nothing could ever have prepared us for the state of limbo we were about to enter.

I don't remember exactly how the rest of that night or the next day happened, if there were more phone calls or not (there probably were) and how much I did or didn't know at that point, but now I have hindsight on my side so whether I knew it then or not, I know now sort of what happened.

The next day I went to work as usual. I had a big meeting and also neither the shock nor the seriousness of the situation had settled in yet. At that stage I wasn't even sure if I was going to need to make the 4 hour drive to Nelspruit because I just assumed that I was going to get relatively good news that day and it would be a matter of waiting for him to come home and get better.

As the day unfolded it became apparent that it was going to be necessary to go, my sister was flying up from Cape Town and we would drive together the next morning. In the meantime my dad had had multiple MRIs, x-rays and scans and the news was not good. He had suffered a T1 and C7 vertebrae fracture and spinal cord compression. I cannot remove the image of the MRI (which I obviously only saw later) showing how T1 had pushed up over C7 causing C7 to stick out a very unnatural angle. The scary part though, was how significantly his spinal cord was being compressed. For reference, C7 is the lowest vertebrae in you neck, it kind of lines up with your shoulders. He also had a degloved and broken left foot. Other than these two major injuries, he was remarkably free of any other major injury. No head injury, no internal bleeding. Not even cuts and bruises, only 1 superficial graze on his calf and a bit of a red mark on his forehead.

He went into surgery to clean the debris out of his foot and also had callipers inserted into his skull so that weights could be applied (to hang over the head of his bed as traction) which would hopefully coax the vertebrae into a better position before his spinal fusion surgery in a few days time.

When Sam and I arrived at the hospital the next day that is how exactly how we found him in the ICU, all braced up, callipers in his head and hands bound to the bed because he kept on trying to swat at the callipers (at least we knew his arms were working at this stage). Despite all of this he was awake, breathing on his own and able to talk to us. He was quite distressed, begging me to get him an energade which I wasn't allowed to get, and it was incredibly distressing for us to see him like that, but now I wish I had held onto the sound of his voice just a little bit more, even if it was just asking me for juice (which becomes a pattern over time by the way).

Here is the thing about ICU. The nurses and doctors there are there to do a job, and the large majority of them take it very seriously (thankfully). It is obviously an all consuming task and for 12 hours straight as well, I hold the ICU nurses with highest respect (well most of them, some I could of done with less of seeing). The beeps and alarms seem to never stop. However this also means that there is usually very little time to hold the family's hand and make them understand what is actually happening. There were times when we felt comfortable when we should have been more concerned and there were times that we were concerned when we should have felt comfortable, but mostly we just felt permanently confused. I wish every ICU would hire a social worker to counsel the families of the patients and put the right emphasis on the medical information in laymen's terms. Just the smell of that place is overwhelming, then trying to take in the monitors, the sounds, the bright lights, the other patients and then also the concern for your family member is too much to handle, never mind trying to process a diagnosis or required procedure.

We met with the neurosurgeon that afternoon. That was when he showed us the MRI images and explained the injury. I was in professional 'hold it together' mode still and just trying to absorb as much information as I could. That delicate shell of holding it together started to crack when my step mom asked how my dad would be able to turn his neck after the fusion and the doctor responded with "well he will have to turn his wheelchair". I will never forget the look on her face, it was utterly heartbreaking. He had already told us that my dad was paralysed at that point, but some things don't sink in until you hear words like that. We still had a defiant hope anyway (which there is nothing wrong with at all), but it makes acceptance hard to come by.

That same evening my dad's oxygen saturation levels began to dip and one of my favourite nurses for that hospital had to explain to us that he needed to be intubated and placed on a ventilator just to help him cope for the time being. The level of spinal cord injury was affecting his ability to use his diaphragm efficiently which in turn was making breathing difficult. In time, and with physio, he would get stronger and be able to breathe on his own again. Or at least that was the idea. She was abrupt and straight forward in her explanation and reasoning. I appreciated someone finally being forthcoming with information, but it was difficult information to take in nonetheless. This was the second big blow of the day, and it was a difficult one.

My dad had always been adamant, and throughout his life it was something he would speak to us about again and again, that he never wanted to be on life support. He had a heart (of the anatomically correct variety) tattooed on his chest with the words 'do not rescucitate' underneath. Just for the record this is not sufficient to actually have a DNR placed so if anyone is even reading this and this is something you feel strongly about, please get a legal living will put in place, and although even that doesn't hold much ground in hospital at least your family are completely aware of your wishes and can make the right decisions in the horrible event that they need to make decisions on your behalf.

However, because the ventilation was being looked at as a temporary measure, we didn't consider it to be life support (it is) and gave permission for him to be sedated and intubated, and he remained that way until his surgery on the Saturday morning.

I don't know what to say, so....

Let's do a meet the blogger questionnaire!

I have been trying really hard to write about my dad's hospital experiences from my point of view, but I can't seem to get it out. In the meantime I shall bore you with some trivial information about myself by blatantly stealing a list of questions from http://question-meme.tumblr.com/post/87877513822/meet-the-blogger. You are welcome!

LAYER ONE: THE OUTSIDE

• Name: Roxanne (please don't sing it, I beg you)
• Eye color: Hazel
• Hair style/color: Boring brown, with that frizzy kind of wave. I have to style it if I want to look at least semi decent, but I usually wake up too late so... ummm yes.
• Height: 1.64m
• Clothing style: In my head I like the idea of being chic and elegant, but honestly if it is clean and it fits then I'm wearing it.
• Best physical feature: ??? What kind of question is this? I have a straight nose?

LAYER TWO: THE INSIDE

• Your fears: Losing the people I love. And then heights, I am absolutely petrified, I almost cried just trying to put one foot onto the platform to see the Mac Mac falls in Nelspruit, I know that it is irrational, but I can't seem to help it.
• Your guilty pleasure: Listening to 'My Favorite Murder' podcast while I work. Don't judge me, it's interesting.
  
• Ambitions for the future: How about someone submits some ideas, we throw them in a hat and I pick one at random?

LAYER THREE: THOUGHTS

• Your first thoughts waking up: I''ll just sleep for 5 more minutes, then followed by oh shit I'm late.
• What you think about most: What don't I think about? 
• Right now my dad for obvious reasons; 
• my husband and kid; 
• why people don't feel the need to stop at stop streets or red lights anymore; 
• what am I going to make for dinner tonight; 
• why does everyone need to eat every damn night; 
• I wonder if toast is a substanial dinner (my family says no); 
• how many school lunches do I have to make until Layla finishes grade 12; 
• maybe I should ask Stephen if he would consider getting a second wife on the condition that she does all of the cooking and cleaning - I think I could be okay with that (in case you haven't realised yet I'm just kidding); 
• I need a holiday; 
• and then wondering when last I was happy and if I will ever feel happy again.
• What you think about before bed: About how much I love my bed, it is so comfortable, and then also all of the above plus more.

LAYER FOUR: WHAT’S BETTER? 

• Single or group dates: Let's get real, this completely doesn't apply. I'm married and we've been together for almost 11 years. I can't remember the last time I went on a date, single or otherwise. Rather ask me what I think about kid's birthday parties.
• To be loved or respected: I don't see why I'm I not allowed to expect both?
• Beauty or brains: What the hell kind of questions are these?
• Dogs or cats: Cats, but family is allergic to them, so dogs win by default.

LAYER FIVE: DO YOU.

• Lie: Usually when I don't want to hurt someone. P.S. Everyone lies. Actually that would make a great title for a book.
• Believe in yourself: Oh hell no. I am 34 and have no clue what I am doing with my life.
• Believe in love: I didn't for the longest time, and I didn't like who I was when I didn't. Now I do though and love (and I am not just talking about the romantic kind just to be clear) is everything.
• Want someone: Yes, someone to cook and clean for me.

LAYER SIX: EVER?

• Been on stage: Yes, and it was mostly terrible.
• Changed who you were to fit in: Every damn day.
  

LAYER SEVEN: FAVORITES

• Favorite color: There is no one favourite, but I am obsessed with all colours in the mint to turquoise range. I also love grey.
• Favorite animal: No, they're all pretty cool and interesting in their own way.
• Favorite movie: Strange Magic; Love Actually; and a whole other lot I can't remember the names of anymore (yes must totally be one of my favourites if I can't remember the title right?)
• Favorite show: I am going to assume they mean TV series, in which case hands down Friends and The Office (American version)
• Favorite book: Power of One by Bryce Courtenay

LAYER EIGHT: AGE

• Day your next birthday will be: The same day it is every year??? I am guessing they mean which day of the week, in which case it is a Monday,  awesome! But that is far away so I don't have to think about it for a while.
• How old will you be: Too old 35
• Does age matter: Now that I am old, not anymore.

What happens next

This blog was never intended to be a grief journal, but as sucky as it is, here I am and I have no fucking idea what I am supposed to be doing and how I am supposed to be feeling. I promise this space won't always be this depressing, but for now, well, for now it sucks.

My psychologist suggested, since I am research driven, that I do some reading up on grief and see what I can figure out. I went out looking for a grief manual. All I wanted was a step by step, 'day 24 - today you can smile again', guide. Something that might at times tell me it's all okay and I am at least somewhat normal.

I can categorically tell you that no such guide exists. Not fucking helpful interwebz... not fucking helpful!

Here is what I can tell you that I have found. There is no right or wrong way to grieve. There is no particular way you should or shouldn't feel. You are probably normal. And as much as it irks me, there is no guide. This is entirely personal. Aimless, utterly non-linear, but it is all entirely yours to navigate which ever way you choose.

I find it excessively uncomfortable to have read so much and still not know what to do. That just does not gel in my universe.

Now, being left to my own devices which usually isn't the greatest of ideas, I can only come up with 2 things that might help me stop crying and maybe make me want to start to participate in life again;

#1 - Remember
Write down my memories. Unfortunately right now my memories, instead of focusing on the happy stuff, have got the last 8 months of his life; that being hospitals, procedures, ups, downs, and the horrible, horrible smell of ICU (how do I get that smell out of my nostrils?); playing on repeat in my brain. To uncover the good stuff, I have to work through and unpack the hospital and bad parts. Do you know how many times I have tried to write about that? I have deleted it every single time. It is just too hard. But I guess I am going to have to do it anyway (sounds a lot like adulthood - doing a whole bunch things you don't exactly want to do).

#2 - Live
Right now the thought of living is not very appealing. Napping however, napping sounds great! I could lie and say that it has only been that way since the accident or death of my dad, but truthfully speaking I have been feeling this way for much, much longer. Here is the thing. My dad may not have been the best dad, but he never wanted anything less than the very best for his daughters and he was always extremely vocal about it. I cannot honour him if I don't look after myself and live my best life. This too is hard, but this is also something I am going to have to do anyway. Fuck being an adult, truly.

So the only concrete piece of information I can find out about grief is - that it is going to be hard. It just so happens that that was the only part I already knew.

And here we have it, another unhelpful write up about grief on the internet.

All kidding aside, I will tell you what has helped though, knowing that I am not nearly as alone as I am feeling right now. The sun will continue to rise whether you want it to or not, and one day, even though nothing will be the same again, I will find a new normal.

Everything will be okay. Until then I will just figure it out day by day (and hope that my family and friends still like me by the end of it).