Chris has already been told that Non Invasive Ventilation may not be suitable for him because of his bulbar issues, that is, the problems he has with his swallow, choking and laryngeal spasms, in fact the doctor said NIV would make the spasms worse. He didn't mention a tracheostomy at all, but Chris's palliative care nurse did.
She called back today and after discussions with Chris's MND nurse she came back to tell Chris how best to manage the spasms which happen everyday now. It was decided that for now it would be best to continue with the lorazepam as it is easier to administer and keep the Modazolam for when the lorazapam no longer works. She also felt it would be a good idea for Chris to be referred to an ENT consultant to discuss the possibility of an elective trachaestomy in the future. There would be no commitment, but it would mean Chris would be better able to make an informed choice about having one. The only problem is that Trelsike in Truro, although they would be able to do a trachaestomy, are not experienced with MND and his MND nurse said he would be better off going to Derriford in Plymouth where they are. The only problem is that Plymouth is 100 miles away or a 2hour plus drive depending on traffic.
Chris's initial reaction was panic, he didn't want a trachaestomy yet. His nurse explained that meeting the ENT Doctor wasn't to have one done now, but to find out more about the procedure and after care. If he should change his mind then that would be fine. On the other hand if his choking issues became intolerable or his breathing deteriorate, then it would be better to have one done electively at Plymouth than as an emergency at Truro. It is a lot to take in.
Chris decided that he would like to see this doctor so Angela is requesting an appointment urgently. Seems a day out to Plymouth will be on the cards soon.
MND is life changing, of that there is no doubt, a tracheostomy is definitely life changing, but it could also be life saving for Chris, this won't be easy for a man who hates making decisions, but he wants to live so it is something he really must think about.
