More supporting stuff

If I believed in god, I'd give thanks to her for providing us with the Canadian health care system and its services. As we enter each phase of Wendy's journey with motor neurone disease (ALS) we discover that it's been anticipated by the team of supporting health care professionals, and there is a specialist professional and suitable and appropriate equipment to deal with it. This week began with a visit from the nutritionist/dietician - who explained to me the fine distinction between these two callings - and continued with the arrival of several more boxes of equipment and supplies. Last week I mentioned to Louise Coulombe, our palliative care physician, that Wendy is increasingly troubled by mucous secretions, and asked tentatively whether some sort of suction like the dentists use, might help. The boxes that arrived today from Ontario Medical Supply included an electric suction machine and all the supplies of saline etc to use with it. It looks terrifying complex in disconnected parts in its box and I dare not try to assemble it. I'll leave that job to Louise or to Jodi Gannon, our visiting nurse. Our living room and our bedroom look more and more like a hospital or clinic, and there is no doubt more to come. Wendy is hanging in there, tackling each new challenge as it arises, most of the time cheerfully and bravely - though she has complained about the discomfort of the face mask she wears when using the BIPAP ventilator. I give her a small subcutaneous injection of tranquilizer to take the edge off the discomfort, and tomorrow I will visit the supplier to see what sorts of alternative face masks are available. The one she got originally was quite comfortable to begin with, but as her facial muscles have wasted away a little bit, it doesn't fit neatly any more, so I'll try to find one that does fit. She continues to lose flesh, her arms and legs are painfully thin and the bones of her spine stick our like so many teeth. Her voice is going too, so we hope the speech synthesizer I mentioned in any earlier post will materialize soon. In case it doesn't, Jonathan is going to make some flash cards with common and important words and phrases on them. The list I already have will be a good start towards this, and in fact may contain everything Jonathan needs. I give her four square meals a day through the PEG tube, and as well she eats breakfast, lunch and dinner - almost all in liquid form, though she does have avocado and banana, mashed up but otherwise indubitably solid.