Last week we had to call another ambulance.
I had an episode of reflux where some feed ended up in my lungs and up my nose. It was scary; I felt like I couldn’t breathe but my Oxygen sats. were the best they’ve been over the last few months. My nose was running and the saliva problem got worse as my body reacted to the feed. My cough wasn’t strong enough to clear it so we used my cough assist and suction machine. Unfortunately my gag reflex is super sensitive (another joy of the MND) – so Julia was looking in my mouth to see the stuff that needed suction and quickly stepped aside as I wretched. It was hilarious!
After 20 minutes I was worn out so we agreed to call an ambulance.
4 minutes later two paramedics turned up in a car (first responders) and a while later two more arrived in an ambulance. Fortunately, in the meantime we had got the chest cleared. Julia said it was “the green uniform effect” and suggested I get a cardboard cut-out of a paramedic.
I didn’t have to go to A&E up at the John Radcliffe in Oxford; they managed to get me an appointment in our local hospital for a chest X-ray to show it had all cleared. The doctor gave me a 3 day course of antibiotics just to be safe.
They are so nice down at EMU (Emergency Multidisciplinary Unit) at Abingdon Hospital – Julia even got a cup NHS tea.
A couple of days later the same thing happened but we managed to clear it without the green uniform effect.
Julia emailed the surgery and the GP got back within the hour, even though it was his day off! He added Dom Pérignon (Domperidone), the true champagne breakfast – to speed up the transit of food through my stomach. Now I am on smaller feeds 6 times a day starting at 7.30am Doesn’t she know I am a teenager !?!
Kevin becomes a teenager
So now we are taking the suction machine and the cough assist wherever we go. I don’t know where I would be without Julia; probably in hospital. I love her more than ever…
Mike has had a fortnight of pampering and beauty treatments, starting with an essential oil hand massage at a meeting of the Oxfordshire MND Association. Our lovely friend, Kath, gave a demonstration and provided the oils for a wonderful afternoon of relaxation. Best bit by far was watching Mike’s Dad give a hand massage to one of the carers.
It’s been a pretty good week for Mike. On Monday we saw our incredible MND team at the John Radcliffe and Prof Talbot was so impressed by the state of Mike he described him as an anomaly. A year ago we asked the tough question about lifespan and were told that bulbar onset, the flavour of MND that Mike has, is usually 2 years from the start of symptoms. That’s Christmas this year. But it is progressing much more slowly than at the beginning and isn’t doing what was expected at all! This is great news and must be a God thing.
Following the Chocolate Button Incident Mike only challenges his airway occasionally now with a spoonful of yoghurt so he has been losing weight; maintaining weight leads to a longer lifespan (as long as you don’t choke on what you’re trying to eat) so from next week he will be switching to a new feed. The dietician suggested that perhaps it was time for a pump but we like the flexibility of small bottles at mealtimes; if he didn’t have to wake up for a feed I think he’d just spend all day in bed watching Netflix.
If you’re of a delicate disposition you may want to skip this next bit because it’s about saliva. As is common in people with MND Mike’s saliva is thick and there’s a lot of it about especially when he lays down to go to bed or reclines in his special chair. This is quite annoying as his constant coughing keeps me awake and drowns out the TV, so something had to be done. Hyoscine patches have done a reasonable job but the past few weeks the saliva situation has been worsening. More medications were tried with no improvements and bouts of debilitating nausea and vomiting. So the only things left were Botox (works for three months) or radiotherapy (irreversible).
Mike chose the botulinum toxin which involves three injections into his parotid and salivary glands. Sounds painful. On a positive note the car park was quiet as it was a Friday and the consultants were all out on the golf course. Mike’s not great around needles but after a thorough explanation of the procedure decided to go ahead. I attempted to distract him half way through by falling off my chair but he still felt light-headed afterwards and needed a little lie down.
I don’t know about you but I can’t see a difference.