Today was another trip to Derriford in Plymouth, a two hour drive away and venturing into England (sorry, a little Cornish joke there.) Chris thought he was going to be given a cough assist machine today, as they are unavailable in Cornwall, to help get rid of the build up of mucous in his throat. At the last visit to Derriford Chris was given a special SATs finger thingy that recorded his oxygen levels at night, it actually recorded two nights altogether and then I posted it back to Jon, the respiratory nurse consultant.
Unfortunately those results showed that Chris's oxygen levels were dropping at different times during the night. Jon said Chris would benefit from NIV at night and would put the cough assist machine on hold for now, partly because of the spasms Chris was still having in his throat and partly because getting used to NIV would be enough for now. Jon got a machine, mask etc and explained a little about it to Chris. He said it wouldn't be easy to start with and it would feel really strange as it blows air into the lungs and helps support his own weaker breathing. He put the mask on him and turned the machine on, well Chris didn't like it one bit and was holding his breath in between each blow of air. Jon took it off and reset it so that it built up in pressure from nothing to the selected amount over about 10 minutes. Chris tolerated this a lot more easily, though he found the mask uncomfortable. It has to fit fairly snuggley as no air should escape. Chris wasn't happy about all of this, he wasn't prepared for it. Jon explained that it wouldn't do him any harm, but that it would help him sleep better and therefore he would be more awake during the day. He said Chris's chest muscles were getting tired and that in turn makes Chris tired and the NIV would take the pressure off those muscles for a little while and help them rest. More importantly it would help him live longer if that was what he wanted.
While Chris was using the machine I could actually see his chest rising up and down and when he took it off it was obvious how difficult he is finding breathing these days.
Jon said there was a special card inside the machine which we could send back which would allow him to change settings etc. He also said this machine was a used machine and if Chris tolerated it and used it every night then he would get a new machine which can be monitored remotely. He also included a humidifier if Chris's mouth got dry. It basically passes the air over steam before he breathes it in. It was quite a decision to go with getting one from Derriford rather than Treslike, but here was Jon offering one to Chris now, when it would probably be a month or two at least before he would see anyone down here.
A bag was packed up with a Bipap machine, hose, mask and filters, plus a humidifier and sheets of instructions and off we went on our two hour journey back home.
I know Chris will adjust, but all theses things are not just a physical intrusion into everyday life, they are also confirmation of this disease's progression and I think that is what Chris finds the hardest. I am sure, as with all the other things, PEG, wheelchair etc, he will find the benefits will out way the negatives and accept them as a way of holding the tide of MND back a little bit longer.
(On a plus point, there is nothing quite like that feeling when you cross the Tamar back into Cornwall :) )
