Felix started to complain of ‘feeling poorly’ while we were playing on the bed on Friday afternoon. Caitlin was with us. Felix said he had a pain and when I asked him where he pointed to the left side of his chest. He wanted to lie down on the sofa and watch a DVD. He looked pale and started to grunt as he breathed. My mind was racing as to what could be happening. I wanted to wait until Shap came home to have his cool headed approach. Even though, my concerns and instincts had been right the last two times Felix seemed unwell, I was not in any way ready for another onslaught. He had not been eating much the last couple of weeks, so could this be because his liver was congested again? Could the valve have suddenly begun to leak severely again? Could some of the vessels around the heart have narrowed, particularly the IVC which had been surgically widened twice now? Could he have fluid around his lungs or heart?
By the time Shap came home, Felix seemed a bit better. He was getting down to play, but still grunting. His breathing rate seemed normal though – he wasn’t struggling like he was late October. I felt around his tummy and back to see if I could feel any puffiness – there was none. His face looked fine, not swollen. He ate a bit of pasta and cheese for dinner (first time for pasta for ages). I asked him how was he feeling. He said ‘fine’. But I know that his parameters for feeling ‘fine’ are pretty distorted, because he has felt pretty rotten for most of his life. Considering last time, he was lying on the floor face down, and grunting, in acute heart failure, and when asked, still said he felt fine.
We didn’t want to alarm Felix or Caitlin for that matter, so Shap and I were communicating in looks and gestures. We decided to put Felix to bed and then to ring GOSH for advice. They said take him to A+E immediately as chest pains and grunting could be a serious combination. I checked in on him and he seemed to be sleeping peacefully, breathing quietly. I rang Musgrove as we have 24 hour open access to the childrens unit and spoke to a doctor who said we needed to call 999 and go to A+E rather than the ward. She would ring them and tell them Felix was on his way. I had been too anxious to eat anything for dinner, and now my stomach was in my throat. I was shaking, saying to Shap, ‘I can’t go through all this again, I just can’t do it’. So we agreed that as Shap was the more together of us, he should go with him. We had to wake him up and explain what was going to happen. He got extremely upset saying ‘..but I am FINE mum, please don’t take me to hospital, I want to stay HOME!!’ When the ambulance crew arrived, Felix’s anxiety went into hyperdrive, at the sight of the blue gloves going on. He certainly didn’t look like he was near death, he has so much fight, it is incredible.
And during all this, there is poor Caitlin weeping and trying to get close to me for comfort, while my main concern had to be Felix. But I had an arm spare most of the time for her. I brought him out to the ambulance in the yard, and then Shap took over. The enduring image of the moment as I got out of the ambulance and said goodbye, was of Caitlin in her pyjamas and mismatched shoes sobbing in the door of the shed. I held her close and we both went inside for a good cry. After about 10 minutes, I put on ‘The Sound of Music’ her favourite film at the moment and her sobs receded to shivers. I made her warm and we watched together. There was no way either of us would be sleeping anyway we were so shakey.
I got a blow by blow account from Shap as it was happening, and this time, there was good communication between GOSH and Musgrove. The registrar who was on call at GOSH knows Felix very well and has been involved with him a lot when he was on Bear ward, so that really helped. But everything looked fine. The x-ray of Felix’s chest was really clear, no effusions, no engorgement of vessels. Blood pressure and saturations were normal, liver not enlarged, he had stopped grunting completely. By morning, he was energetic, asked for breakfast, ate and drank reasonably for him. So GOSH were happy for him to be discharged. When I came to pick them up, Felix ran UP the ramp to greet me.
So what was that all about? I am not convinced it was nothing. He was grunting again this evening while lying down on the sofa watching a DVD.
I asked him ‘why are you making that noise?’
he said ‘my engine is broken’
‘do you have a pain?’
‘Where is it?’
‘Everywhere, in my legs, in my pacemaker, in my head’.
But apart from the grunting noise, he seemed to be well. Shap came in to try and distract him, to see if that made any difference and he stopped grunting for a little while, then went back to it.
So, is his pain gastric? Or imaginary? Was the pain in his chest just a muscle thing? Is the grunting becoming a bit of a habit, now added to his repertoire of (mostly train) noises that he makes?