Some may ask why I am sharing these moments. Some consider me very brave for doing so. The truth is I need to share them. I need to state ‘This happened to us.’ It is part of my grieving, acceptance and healthily ‘moving onwards’ process. I live every day with memories such as these alongside all the amazing ones. It was the reality of my life then and shapes who I am now.
Thursday March 7th:
The most horrific morning I’ve ever experienced as the most extreme panic attack set in. I couldn’t function, shaking, heaving with nausea, crying, too distraught to speak, eat or drink. I had to be treated like a baby, my friend Ruth taking me as an emergency to my GP who gave me anti-anxiety medication, and then tried to get me to eat and drink something but I couldn’t, the panic and nausea were too great. I cried in a crumpled, broken heap beside her, under the pressure of needing to be able to function so I could go and see Ga, who would be worrying if I didn’t get in soon. But I couldn’t get myself better. During sobs I admitted to Ruth I was scared Ga may die as I’d never seem him so sick before. In the end her, and some lovely friends from church worked together to get me well enough to get to Ga’s bedside, through getting hold of a friend’s supply of diazapam (not advisable I know, but in the end it was only this that helped me calm down enough to have a shower, drink something and be able to leave the house), and driving me to the hospital, working out where would I sleep for the next few nights, as I couldn’t be alone. From this moment on I was too frightened to ring the hospital for an update incase they said he’d deteriorated, so others did that for me.
But when I saw Ga on the respiratory ward, he smiled at me as the chest physios were busy trying to get up the thick, treacle-like brown gunk that was filling his lungs. He was quite breathless so we didn’t talk much. We didn’t really get much time alone as once the physios were finished (they were seeing him every 4 hours at this point) the nurses were setting up his IV fluids, antibiotics and PEG feeds. Ga’s dietician came in with lots of easy to eat snacks for Ga, and myself, and gave me the biggest hug. Ga must have been so exhausted and frightened (but neither of us ever verbalised that fear) but his fighting spirit remained and I could see he was doing all he physically could to get the gunk off his chest, using a variety of differing breathing machines to assist him. I left in the evening, setting up my temporary home at my sister-in-laws house.
Friday March 8th:
I slept well (the medication helped) and woke up in an empty house, as everyone else had gone to work or school. I took my bible and had some time alone with God whilst eating breakfast, looking out into the garden. This became a regular, daily occurrence over the next two weeks. I knew I’d need both food and my God’s sustaining presence and perspective to help me face whatever the day would bring. I got to Ga about 1pm and he looked more relaxed and told me he felt better. We chatted a little but mostly I sat in the chair knitting a purple cardigan for a friend’s little girl or reading a newspaper whilst he dozed, his breathing still laboured. The phyios reassured me that what he was bringing up was nothing unusual for a severe chest infection. It was a very calm, relaxed day after the drama of yesterday. I even contemplated not needing to use my two week sick note, as if he progressed to needing just his usual IV antibiotics I could return to work. I day-dreamed about us walking out of the hospital together, ready for our next adventure, after having the conversation about ‘no more trips abroad!’ Our favourite CF specialist nurse popped in to say goodnight before she left and said she was pleased she didn’t have to worry about Ga over the weekend.
Ga went back to sleep but woke some time later, wheezing. The nurse gave him his nebulisers and I gave him some chest physio (whacking him on the back to dislodge the gunk so he could cough it up). Neither worked and Ga got more distressed. The on-call chest physio came and I watched as for 45 minutes he worked with Ga but all they had to show for it was a small. gloopy blob of thick, brown sputum. I could hear Ga wheezing and see he was beginning to panic so tried to remain calm myself and help him calm down. I felt like a crap nurse worrying I was missing something vital that would make this better. As the physio went to leave Ga pleaded with him not to ‘It’s not getting any better!’ But the phsio went, not wanting to exhaust Ga any further with strenuous physio exercises. I didn’t know what to do; knowing something was desperately wrong as Ga never complains and went out to get the physio and nurse back in. I was only out of the room a few seconds but when I came back Ga was sitting up in the bed, head rolled to one side, unconscious and not breathing. My nursing experience kicked in even though I was thinking ‘My husband’s stopped breathing!’ and I shook him, shouting his name but got no response so pulled the arrest buzzer. And in hardly any time at all the crash team was there, sticking needles into him, getting a trace of his heartbeat (which hadn’t stopped thankfully) and were putting an plastic breathing mask over his face and manually breathing for him with it. I tried to be helpful, asking what I could do to help, but the nurses told me ‘Nothing. You don’t need to do anything.’ Of course. I was the relative now, not the staff member. So I quickly texted ‘Please pray – He’s arrested,’ paced the corridors, sat in the relatives room or stood watching the team work on Ga. A friend stayed on the end of my mobile until others arrived (after going through every red light)! It felt like an eternity but can’t have been more than 30 minutes and I broke down in their arms, sobbing, as plans were in progress to urgently transfer Ga (who had gained conciousness somewhat) to Intensive Care.
Amongst the waiting, the trauma, and distress I had the realisation that Ga may die tonight. That this could be the time I lose my husband, that |God takes him home. I remember having a deep, inner calmness and contentment, that if that was what was happening, I knew deeply and confidently that Gareth would be okay. I knew that we would both be okay. We were both safe in God’s care. That safe feeling held me together as the shock, trauma and unknown outcome ravaged my physical and emotional self. In the midst of this there was an intimate, unspoken conversation going on between me and God.
As they were waiting to get his trolley into ITU I trepidly went over to hold his hand and was immensely surprised to see him conscious. His eyes followed my face, nodding or shaking his head to whatever it was I said. I tried to keep my voice light and reassuring but I’m sure my face gave away my true state. I could hear friends praying. I was glad for that as I couldn’t string a sentence together at this point. Eventually he was in ITU, Ga worrying about how I was doing! The chest physio was back and now Ga was using a Non-Invasive Ventilation (NIV) mask, a rubber and plastic contraption that rhythmically forces air into the lungs to open them up and aid breathing. Ga looked quite uncomfortable with it. As the chest physio worked on Ga (who was hot and sweaty) I lay my head on his bed, by his knees and Ga stroked my hair with his free hand. I had no words to convey my thoughts and emotions, just sheer relief I still had Ga and he was well enough to touch me. His touch was so precious at that moment; I don’t know how long it lasted. In the end two, massive thick plugs of sputum were coughed up and immediately after Ga was able to breathe quite normally (relatively speaking) on oxygen alone. His oxygen saturations were good and soon he was sleeping, so we went home, emotionally exhausted but hopeful that with some rest, our feisty, determined, mentally strong Ga would continue his recovery.
Saturday March 9th;
I visited Gareth on ITU with his sister, where he was back on the NIV mask as despite initial progress his Carbon Dioxide levels has risen overnight. The blonde-haired, bubbly nurse, Carla was lovely, explaining everything to us but encouraging us NOT to talk to Ga, as he needed all his energy to breathe, do physio and get the gunk away from his lungs. Ga was fully conscious but exhausted and the NIV mask made it very hard for him to talk anyway but of course at times he wanted to join in with us and we had to repeatedly make deals with him that we would only stay if he didn’t talk to us! At one point though, Ga shared of his experience the night before, saying that throughout it he was worrying about the effect him struggling to breathe was having on me. What a wonderful, thoughtful man. He said that just before he actually stopped breathing he thought he was about to die. His last thoughts before he stopped were ‘I asked God to look after you, and I committed my spirit to God.’ He remembers me shaking him and shouting his name but wasn’t able to physically move. When he eventually did come around he was quite surprised and thought ‘Oh, i’m alive. I’m still here!’ How thankful I am he was able to share that experience with me.
He desperately needed to sleep (this being his 9th day without decent rest) but sedating him wasn’t ideal as he needed his reflexes to cough up the gunk. Ga’s CF consultant popped in to see him, encouraging him to keep the NIV mask on for as long as he could as the next option would have to be invasive ventilation, which was a last resort. Ga understood this, and I could see him mentally taking a deep breathe to endure the discomfort of the NIV mask, agreeing with the Dr and saying decisively ‘I don’t want to be ventilated!’ We left him in Carla’s capable care and I met my family, who’d driven up that morning. Later that afternoon his sister and I returned, and hoping to add a bit of fun and humour into the proceedings had bought him a plastic door hanger at work saying ‘Creative Genius at work‘ and some mutlicoloured smiley faces. We told Ga that for each horrible thing he went through and for every hour he kept the NIV mask on for, he’d get a smiley face and my deal was that if he filled the chart he could have both the chickens AND pond he’d wanted for our back garden for ages (that I’d always said no to until now). At this he looked at me sheepishly and said ‘I feel guilty now!‘ – as he knew how much I didn’t want them!
That afternoon Ga remained extremely sick but was still alternating between the NIV mask and normal oxygen. Carla told us when she’d started her shift that morning she would have put money on him being ventilated by now. I was again immensely proud of Ga and his steely determination to endure it all, and thought he had contributed significantly to Carla having lost her wager. It was very hard leaving him to go home. Some relatives never leave their partner’s side. Should I have done that? But seeing Ga like that was taking it’s physical and emotional toll on me and I didn’t have it in me to be there 24/7. I also didn’t think that would do Ga any good, me never leaving and getting more and more exhausted myself. So I went home with my dad and brother, updated my daily facebook update, feeling peaceful and positive he wasn’t ventilated as had been expected.
Sunday March 10th.
I was looking forward to Christian fellowship in church before heading back to ITU but when I rang the unit I heard how he’d had a rough time and although better now had been panicky and scared like he had been on Friday evening and he took me up on my offer to come in earlier. So I didn’t make church. Again, inside, that knot of fear… where was this heading? My role was mainly one of reassurance. It wasn’t a time for talking; breathing was a huge effort and taking up all his energies and thoughts. So I sat beside him holding his hand as he tried to rest in between. I left him to have dinner with my dad and brother but throughout I had a knowing sense of doom and was inwardly becoming increasingly panicked by what I would find when I returned.
What I found was Ga’s bed now at the opposite end of ITU and he was visibly worse. He was struggling for every breathe, using his accessory muscles and shoulders heaving as he breathed in and out, intermittently having hacking, violent coughs and using the suction to bring up small (oh so small) amounts of thick, brown gunk. It panicked me to the core and was an immense act of will for me to stay by the bedside watching him going through it all, and my insides wanted to run away from this terrible scene. Thankfully Carla was looking after him and I’m ashamed to say I was relieved when asked to wait outside whilst the ITU consultants reviewed him. I sat outside feeling numb, frightened, inadequate and unsure what to do. Ga’s sister arrived and I filled her in through my tears. I felt sick, like I had only 48 hours earlier. More phone calls to get me reunited with more diazepam. I was too scared to go back in to see him. Ruth had to go first whilst I composed myself and found the mental strength to do what I needed to do. The team were trying a different ventilation mask with Ga but he was getting more distressed and agitated, telling us that ‘it’s not working – give me the other one back!‘ and he asked for his trusty PEP mask (something he used every day at home). As the panic and distress rose up in me I was glad of something to do so went in search of it. I couldn’t find it in ITU so went down to the CF Unit to see if they had a spare one. Thankfully the ward was quiet and I found a nurse I knew and as I asked for what Ga wanted I broke down and started crying. She took my hands and led me to the staff room, exclaiming they were freezing (I guess I was in shock) and for the first time in seven years I wept on one of Ga’s nurses’ shoulders. We didn’t find the PEP mask but I felt calmer after my outburst and I made my way back to Ga, who said to me apologetically ‘I think I need the ventilator.’ The desicion had been made with the consultants whilst I was away to ventilate him for 48 hours, to give his body chance to rest.
In my heart of hearts I knew this was our last conversation, but couldn’t verbalize that to him. I was trying to protect him, but he must have known too. I was able to get up close to him, look him in the eye and nod, saying ‘We love you, we’re proud of you and we know you’ve done everything you can, and I agree, you do need the ventilator. You need a rest. And I’ve just seen your CF nurse who told me some people with CF have come off ventilators. So you have a rest and we’ll see you in a couple of days.’ Then I lifted off his oxygen mask and kissed him on the lips firmly, but quickly (knowing he needed the oxygen back). As I kissed him I was thinking ‘This is it. Our last kiss.‘ I waved him goodbye and then waited outside with his sister where we promptly began to cry and hug each other. I was numb and exhausted. Unable to eat properly all weekend and thankful for the homemade fudge thoughtful friends had supplied me with, to keep my energy levels up.
Not long later and it was all done and Carla invited us to go in and see Ga. He looked so peaceful and calm, compared to the immense struggle he’d been having to breathe minutes previously. To be honest, it was a relief to see him like that. He had white elephant tubing attached to a tube coming out of his mouth, attached to green and white filters running to the ventilation machine. His breathing was 25 beats per minute, rhythmic and calm. It was a relief to know he was resting and not aware of what was going on around him. But I knew that a CFer, with a raging chest infection that had showed no signs of improvement, with no sleep for so long had very, very slim chances of getting off the ventilator and recovering. i hoped that the 24 -48 hours of ventilated rest would be enough for Ga to regain some of his strength so he could keep fighting the infection, but I also felt that the countdown to the end of his earthly life had begun.