Monday 4 February 2013

visit from Specialist Lung Clinic Nurse

D and a physiotherapist from Wy Hospital visited Rachael. The physiotherapist spoke to Rachael about the use of Mucodyne, he told her that it would be ten to fourteen days before it begins to have an effect.
He then discussed Rachael's use of the Cough Assist machine, he suggested that the pressure should be increased. This was then tested on Rachael and a setting of 29cm H²O was recommended. This can be increased to 32/33 if Rachael requires it, but if it exceeds this the physiotherapist should be contacted and he will come to see Rachael before the pressure is increased any more. He also suggested varying the routine and using two sequences rather than three.
Rachael was feeling very unwell when D arrived. D said that this was probably due to a combination of the effects of the Oramorph and the lack of use of the NIV. She said that Rachael should take half the dose of Oramorph until she becomes used to it.
D also adjusted the NIV so that it breathed in sequence with Rachael's natural breathing cycle. This was a great improvement for Rachael as she felt she no longer had to fight the machine.
D then gave Rachael a second NIV machine which has an internal battery so that she can take it out of the house and use it without needing a power supply.
D said that she will visit Rachael again next week with another NIV machine that will fit on the back of her wheelchair and also has an in car adaptor. At the same time she will discuss the later stages of MND with Rachael.

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