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.