The Battle to Breathe
Wednesday 14th September, 2016
As I write today's post we have recently returned from our first holiday abroad since Marc's illness. We spent a gorgeous fortnight in Menorca, doing little other than swimming, resting, reading, eating out and generally enjoying each other's company. The children did fight, and on occasion I became frustrated with them, but all I had to do was remind myself that sibling arguments are part and parcel of normal life, and two years ago life was so far from normal that sibling arguments did not even register in my thoughts. Thinking back, I don't remember the children arguing at all during Marc's first few weeks in hospital, as though they knew I couldn't have dealt with it. It almost made me enjoy their childish disputes during the holiday (almost - not completely, I hasten to add!)
Following the drama of Marc's sudden drop in heart rate we fell back into some kind of uneasy routine again. The summer holidays began (not that I really noticed - I had been off since Marc fell ill) and the children were at home more. My life was filled with making sure they were cared for, visiting Marc and little else. The pressure of visiting became very intense due to the fact that mostly only Linda and myself were visiting Marc during this period. He was still struggling to master the Drager machine and breathing independently, so visits were quite stressful. Further complications with his heart rate and temperature meant the nurses often had to take him off the Drager to allow him to stabilise, but this was very frustrating as it only delayed the time when he might be off the ventilator altogether.
A step in the right direction
He did begin to manage slightly longer sessions on the Drager, which was a move in the right direction. The nurses who cared for him each day formed a huge part in spurring him on to increase the amount of time he spent on the breathing circuit every day. Like everything else with Marc's recovery, I had naively assumed there would be an upwards trajectory to his breathing progress, with him managing an increase, however slight, in the time he spent breathing independently each day. I was wrong. One day he would manage up to six hours on the Drager, the next his heart rate or temperature would be elevated and he was back down to two or four hour sessions again.
His nurses tried all manner of tactics each day to help him, from distracting him by making him laugh, to 'tough love' ('Keep going Marc - you have to do this!') I'm certain I was not the only one frustrated with his lack of progress. He seemed to be quite depressed and when I asked him about how he had slept as I greeted him each day, he would shake his head to convey how tired he was. The doctors prescribed a number of different sleeping pills and anti-depressants to try and elevate his mood, none of which seemed to make any difference. We were all convinced that a more positive attitude would help him make more progress, but I felt helpless as to how to help him feel happier. It was clearly something he had to do for himself.
I found myself often staying later, after visiting time, because I knew he found it easier to manage his sessions on the Drager when I was there with him. The nurses were wonderful, and always let me stay that extra half an hour while he completed the allotted period of time. I would sit next to him, chattering inanely about whatever had happened that day, trying anything to distract him from his pain and exhaustion while he worked his lungs. I would come away from these visits completely shattered myself, glad that I had helped him but the effort which I had put into keeping him going draining my own dwindling stores of energy.
He would often clock-watch, knowing exactly how much time he was supposed to spend on the machine and counting down the minutes until his nurse would put him back on to the ventilator. He knew then that breathing would become easier as the larger machine supported him and took over the job. A particular nurse, Erica, was wonderful with him and told him straight that constantly looking at the clock was not helping him. Breathing needs to be an unconscious activity, and if you have to constantly think about doing it then it isn't going to come naturally. By desperately looking forward to going back on the ventilator, he was effectively looking forward to giving up on breathing for himself. Erica would purposefully pull the curtain across so he couldn't see the clock, and instructed me not to tell him the time if he asked me.
Around this time I was still finding running really calmed me. Short sessions, no longer than around twenty minutes at a time, but each one helped to rid me of some of the stress I felt over Marc's situation at this time. I found some days I would push myself to run faster, further, and when I was struggling and wanted to stop, to slow down, to walk, I pushed myself to continue with the thought that this was what Marc had to do too. The thought of him fighting to breathe by himself for longer and longer periods each day, despite the pain it caused him, allowed me to run further and faster. An as an added bonus I felt like I was silently supporting him, though he was unaware of it, by conquering my own challenges.
Less of a strain
Gradually, over the period of around three weeks, he managed to build up to longer and longer sessions on the Drager. Eventually he was doing two four hour stints on the machine a day, with a rest in between, then eight hours straight, then ten. By mid-July he was actually managing twelve hours, and after he had cracked the 'half a day' goal something seemed to click. The staff in ITU had obviously sensed that he was finding it less of a strain, and began to increase his hours on the Drager quite significantly.
He was soon managing 16 hours stints, and Erica informed me that once he had done that, they were going for twenty four hours straight. I asked what the goal was after he managed an entire day, and she laughed. That would be it then, she said: no going back. Once he had managed a day, they would just keep him on the Drager permanently, and reduce the pressure he was still being given on that machine gradually until he was barely being given any support at all.
The biggest battle to date
I couldn't believe it. The thought that he would be off the ventilator for good seemed too good to be true. I think there were periods of time where I thought he would never be off it. When another fantastic nurse, Andrea, called me at the end of her night shift on 24th July to tell me he had managed the full twenty four hours, I was over the moon. She was understandably a little nervous about calling the house so early - it was around 7am - but Marc had insisted she do it before she went home. He was clearly well aware of what this achievement meant for him. I think I probably screamed, and the children must have thought I was mad listening to my reaction over breakfast. I was so grateful to all the nurses who had helped him overcome what was one of his biggest battles to date.
Later, when I asked him what had finally helped him to conquer the dreaded Drager, he told me it was the thought of not seeing the children. The fact that he had now gone over three weeks without seeing them was killing him (metaphorically, not literally!) and he felt that if he didn't just 'suck it up' and deal with the pain then he might never see them again.
Thinking about him
At the time the only method the children had of communicating with Marc was through me. They would send him messages and pictures they had drawn for him, and I got them to record short videos to show to him, of them telling him jokes or singing him their favourite songs. I tried to take him something to him from them every couple of days so he knew they were thinking about him, as I was certain that this would be the most inspiring thing I could do for him. I also pinned up their school photographs from the end of the year at the foot of Marc's bed so he could look at them at all times.
But it wasn't the same as being able to see them, talk to them, hug them. And that, in the end, was the powerful push Marc needed to get him through whatever barrier was preventing him from breathing unaided. The reward for all his effort was not an immediate visit from them, that was impossible. But in the end, what spurred Marc on the most was simply the knowledge that, once he was off the ventilator, the day when he could finally see his children again was just that tiny bit closer.