This morning was not quite as successful as yesterday but still we left the house with all the right stuff and on time for school. I didn't realise though that there was going to be a Bad Mummy moment again; the second in 2 days!
As I was driving along I suddenly realised that I was supposed to have picked up my friends kids as I had said that I would take them to school for her. Shit, shit, shit. Cue dodgy u-turn and manic driving as I make my way back to get them. We set off again and I keep glancing at the clock and the traffic thinking that we will just about make it. Big Fella turns to his friend and said "you know Mum forgot you. That's why we were late picking you up". Cheers. Thanks for that son.
We pull into the carpark and as I frantically try to match the right bag with the right child we hear the bell (which signals for them to get into line and be quiet). We start running (or at least the kids do. I do some kind of funny walk cum jog because my bad leg refuses to cooperate and burst into a sprint!) Then there's the whistle. Nooooo. That means the lines start filing into their classroom and you have to get into the classroom before the door shuts otherwise you're going in the front door under the watchful glare of the head teacher.
Luckily the kids are quick and by the time I make it into the playground they've joined the back of the line and I can just see them to shout 'bye'.
I took my car to the garage to get it's headlight bulb fixed and my friend followed me there and then took me to Homebase with her. Now I know your thinking that there's plenty of better places to go shopping but let me tell you something. The homebase has had a refurb since my last visit and now has a Laura Ashley and a Habitat concession in it. Happy days. I pottered around getting excited over candles, paint and power tools much to my friends amusement. I haven't been getting out much recently so a trip to homebase is about as exciting as it gets! I was practically giddy when I saw the bargain bins and spent a good while rummaging through. I got some great stuff, as did my friend but Hubby didn't think they were very 'essential' purchases when I showed him them. Oh well. It could have been worse. She could have taken me to The Range!
After school the kids were good and Big Fella was excited because one of the traps for his Skylanders Trapteam game had been delivered. I don't get it. All I know is he needs to get these traps to trap the baddies and win the game. But they're not daft- there's about 50 of these bloody traps for you to buy all at £6 each. Some of them apparently are 'rare' and are selling in eBay for £50!! Mental. He won't be having that one I can tell you now.
When the kids were in bed I went to hook up to my TPN feed. I did it exactly the same as I've done it every other night but about half an hour later the pump starts alarming. It's telling me that I have an air bubble in the line. The pump is actually quite a clever piece of kit as it can detect even the smallest of air bubbles aswell as sending when the wire has got tangled or bent preventing the feed to flow properly. I'm used to having it now and very rarely it alarms now as even when I'm sleeping I somehow manage not to get tangled up and choke myself!
So the pumps alarming which means it's beeping at me in a very high pitched manner. I have to go through the protocol for air in the line which means I have to disconnect the feed, flush my Hickman line with saline and then prime the line (which means that I let some if the feed run out in the hope that the air bubble runs out with it). So I've done all that and I'm exhausted and heading for bed when the bloody thing alarms again. I know I should be pleased that it's saving my life but right now I'm just a bit pissed off.
The reason that it alarms if it senses an air bubble is because air in the line is potentially life threatening. The Hickman line goes through my chest and into a vein that goes directly to the heart. I was told that if air gets into that vein then it could kill you. I'm not sure how but all I need to know is that air in line could equal dead Nat so it's something to be taken seriously.
I decide that I will change the giving set (the tube that connects the feed to my Hickman line) as that's sorted out the same problem in the past. So I do all of this, and baring in mind this all had to be done aseptically, ie sterile, it is a bit of a faff and takes a fair amount of time.
And it alarms again!
This time I give up. I clamp the Hickman line, turn off the pump and ring the out of hours number of my healthcare company that provide the fluids and nurses etc. I go through all the usual rigmarole of name, date of birth and the rest and then I finally get to speak to someone. I explained what had happened and she said that she would speak to the oncall nurse and ask her to call me. It could be up to 30 minutes if she's with a patient, she told me. And that's fine. It's not life or death and I'm sure I've been 'that patient' many a time.
I was surprised then to get a phonecall a few minutes later. I was prepared to start going through what had happened again to the nurse but it wasn't the nurse- it was the lady I had just spoken to. "I'm sorry but we don't have the contract to do out of hours nursing anymore. We only have the contract to deliver your feed and medical items."
What???? You're kidding???
But apparantly not. They weren't joking. They don't have the contract to do the nursing now so I can't speak to a nurse or get a visit from one anymore. The nurse had given her a message to relay which was to take the feed down and skip a night and then ring the unit tomorrow. By the unit I assume she means St Marks but I just can't get my head around the fact that at some point they stopped providing out of hours nursing support and nobody told me. When I asked why patients weren't informed there was no answer other than she would leave a message for customer services to contact me in the morning.
I just can't believe it though. The contact has changed at some point and now there's people like me, probably a lot that are iller than me and very vulnerable with no nursing support at night which is the time when we all connect up to our feeds. It's just not right.
When I tell Hubby his response was "well that's what you get from a Tory government". At this point I really couldn't cope with getting into a political debate so I just went 'mmm' and 'yeah' while he went on about stuff that I don't really understand but that he obviously wanted to get off his chest.
I did ring the Intestinal Failure Ward at St Marks but all the nurses were in handover and when I've rang since there's been no answer so I guess they're busy looking after the patients.
So now I'm in bed, trying to stay awake long enough to finish writing this while my eyelids are desperately trying to close. It feels very strange to be in bed with no rucksack, no wires, no pump whirring in the background. I guess this is what life was like before TPN feeds. It seems like it's been such a long time since I wasn't accompanied into bed with my rucksack and wires. I guess this is what it's like to be 'normal'. The simple pleasure of getting into bed is lost on most people but tonight I will savour every minute of it. Ok, maybe just a few minutes because when I finish blogging I'm definitely going to be asleep as soon as my head hits the pillow.
So tonight I will enjoy sleeping unhooked and relish the ease of my 4 nightly trips to the loo because I won't be dragging 2 litres of fluids around with me in that bloody rucksack.
Good night!
NB x
Comments
Post a Comment