Thursday, July 15th 2010

A bit of a scare

Today has not been a good day for me. I woke up around 6 a.m. with a bad headache and immediately my suspicions turned to the air pocket mattress overlay I was trialling. The reason I say this is because we had real trouble trying to get me in a position where I could be elevated without having my head forced forward too much. But to avoid ending up with my chin close to my chest and causing discomfort we ended up having to lower the head end of the bed more than I would normally. So I suspect what happened is that my weakened chest muscles were just not up to the job of allowing me to breathe normally at such a shallow angle. In other words there was a build-up of CO2 in the blood.

A second problem I’ve highlighted with this new mattress is that my hands get very uncomfortable on such an uneven surface. Half the time the fingers end up getting trapped in the crevices between the air pockets and as I’m unable to remove them myself they just lay there steadily getting more uncomfortable.

But the real big problem for me today (and I’m not yet certain if it’s related to my position on the mattress) has been a build-up of secretions on my chest. Now normally this is never a problem for me but this morning I sounded like a frog when I talked. By the time breakfast was over the situation had worsened and I was struggling to get two words out before lapsing into a weak sounding cough that did nothing to shift it. Helen (one of the hospice’s physiotherapists) was called in and tried several things including putting me on a nebuliser to try and break up the secretions, measuring my oxygen saturation, and trying some simple chest patting techniques. We were almost at the next stage of looking at using suction (indeed a machine had been brought in and placed by my bedside), when things improved a little. A while later I was visited by the hospice’s doctor who very quickly diagnosed that I had a chest infection. Antibiotics were prescribed, initially in capsule form which I rejected on the grounds that they were too big to swallow (i.e. about the size of a torpedo fired from a World War II submarine smile_regular ). Large tablets these days are a hazard and can (and do) get lodged in my throat so I avoid them like the plague. Eventually I was given antibiotics in liquid form.

Helen returned a little later after having contacted the Southampton Respiratory Centre for advice (it was these folks that I had visited a couple of times last year, remember?). Basically they were saying that in situations like this things can change rapidly and that the signs I was exhibiting were indicative of a weakened respiratory system. Suddenly I was being presented with various options and courses of action ranging from staying at the hospice in the hope that the simple measures they were taking would be sufficient, moving back to Basingstoke Hospital where they had machines that could support my breathing, to going down to Southampton and spending some time in the respiratory centre under observation. My gut feeling was that today’s episode was tied to my sleep posture last night. I really didn’t want to get into the realms of non-invasive ventilation (and all that implies) when I was still trying to get my head around the fact I would never walk again. Suddenly MND was hitting me from both sides with mobility and breathing issues. It was all becoming a little overwhelming.

So I’ve decided to stay at the hospice for now and go with my gut feeling and see what happens over the next 24 hours. I stayed in bed until 4 p.m. cancelling my midday meal and feeling really drained. Later I was able to be hoisted into my chair whilst the staff swapped the mattresses over. I’ve now got the top-quality alternating pressure mattress back again so I’m hoping for a better night’s sleep and no chest problems in the morning. I certainly feel a lot better this evening and staff have remarked that my colour is returning.


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