Making memories for our young family as we live with Motor Neurone & Fabry's Disease

You couldn’t write this stuff.

March 24th, 2018

So welcome to our new website.  Hopefully you will find it much easier and more mobile friendly.  Please feel free to comment on your thoughts and suggestions.  Our new site has been created and built by Grant Hood who is the husband of one of my carers; he has done it for a few Sunday dinners and drone flying.  We can’t thank you enough for giving up your free time to help us.

My previous post mentioned an operation well we got there in the end is all I can say.

After waiting 6 hours to get a wrist band they finally sorted it on the way to theatre.  Nearly forgot they lost my notes and found them at another hospital, as a result of this they took a brief medical history! I have two life limiting illness, it’s never going to be brief.  We were meant to see the anaesthetist prior to surgery and as we hadn’t Liz wanted to come down to surgery to see what the plan was.  Brief notes appeared, MND and fibromyalgia? Err no, Liz asks to look and sees Fabry's crossed out and fibromyalgia written in, so then this is debated.  Next up the anaesthetist, he knows none of this, refuses sedation on the grounds it could turn into a general anaesthetic and they may not get me of ventilation and have to perform a tracheotomy, with no ICU bed was available.  In pops the surgeon, I have never fitted a portacath under a local anaesthetic.  Oh well first time for everything.  30 minutes in and should be done , one hour in pipe won’t fit, lots of hard pushing on a weak chest, Liz is asking questions, 30 minutes later and into recovery.  I became unresponsive and paralysed, oxygen saturation 90% and falling, I was aware of what was going on, I know how you feel Simon Adams.  Liz asked for my ventilator, still in surgery and when it did arrive no one but Liz knew how to use it.  Guess what next, the machine appears to have a fault and is breathing far too fast for me, no way to tell anyone, Liz knew something was wrong so checked the machine but it needs a specialist to unlock it and alter it.  Meanwhile after 45 minutes I had gained the ability to groan slightly, not great as no one knew what I was saying, not any different to normal then, over the next half hour my voice came back and movement.  No one knows why this happened but I have done some scary stuff but this had me seriously worried. The event started at 3.30 and we got back on the ward at 9pm.  I kid you not but you couldn’t make this up.

Popcorn is now fully installed and being just as much a nuisances as me, although I don’t chew things. The girls love her to bits and won’t leave her alone. The garden is getting the dog proof perimeter treatment.  She fits right in lol.

Night care is finally happening with 2 new carers and our 18 month battle with the CCG over a new bed has been won by Liz and is arriving on Monday.

Liz and Jason with Archbishop Sentamu at St Lawrence ChurchFriday was Easter school church service, which is a laugh with our vicar and Archbishop Sentamu, which was a surprise and great fun. We also got invited to our local church for Easter Sunday with an 8.30am start, hmmmmmmm but there is a bonfire to symbolise the sun rising and oh yes bacon sandwiches, count me in and I can get there in my wheelchair as it’s at the road end.

Lilly and Poppy clip n' climbSaturday the school holidays, joy. Only kidding, first off leisure world Bridlington, thanks to Julie my carer. Her birthday present to Poppy was clip n’ climb followed by swimming and water slides. The girls had great fun as did Liz and Julie. We don’t have much planned for Easter but then again this blog post all happened in 6 days so it’s unlikely to be quiet.

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