Here are two emails I sent recently which gives you an update on my life...
5th December 2013
Hello my lovelies
Thought I would drop you a line to update you on the saga that is my life.
I'm currently in Princess Alexandra hospital because the new line was infected. They took it out in theatre last night so now I have no line. This means I cannot go home as I have no way of getting my overnight fluids and without these I become dehydrated and risk kidney failure.
Because the chap who put the line in at Harlow had such difficulty (and I don't think he did it right) I have said that I don't want him to put another one in me. The last 2 lines have been in my right side because the veins on my left side are very poor and it would make putting a line in even more difficult. Because of this I asked to be transferred to St Marks so that they could put the line in as its likely to be a tricky procedure.
St marks have been in contact with Harlow this morning and said I'm 10th on the list to be transferred in. The problem is, even if I get transferred in they have no theatre slots until the new year to put a new line in, which would mean me spending Xmas in hospital miles away from home.
Harlow are going to do a veinogram to look how bad my veins are in the left side and see if there's any chance they could insert a line.
If they do it will probably be a pick line and then because of where it comes out (in the lower arm) you can't manage the line sterile on your own at home so it will mean I would have to have the nurses coming in and out morning and evening again.
Not being independent in my care means I will be at the mercy of their schedules and not able to hook up when I choose but at least I would be at home with my family.
I have no idea when they might do the veinogram so don't know how long I will be in and I'm terrified that I will end up in hospital over Christmas.
I'm trying to stay positive but its hard.
It looks like my premonition of spending everyone's birthdays in hospital this year was right- Hubby's is next week.
I know Christmas is still 20 days away but there's the school plays, day at winter wonderland that I had booked for the kids inset day on 13th, Hubby's birthday, putting up the tree... All those things leading up to Christmas that make this time of year so special that I might miss.
I never thought anything could top how shitty 2009 was, but this year has been the worst of my life.
If you're that way inclined, please remember me in your prayers
NB
10th December 2013
Hello again my lovelies
Guess where I am now? St Marks! Here's how that happened...
Not long after my last email PAH put in a picc line. (Bit like a Hickman line but starts in your arm and finishes in a vein in your heart)
The first night, Friday it was sore but I had my TPN fluids and it was ok. However on Sat night it hurt so bad when they started to infuse that they stopped it, then tried dripping it in slower but that still hurt so they stopped it altogether.
They said they would get the on call dr to see me Sunday but he never came until 8pm! He said he didn't want to use the line 'just incase' and that he would try to get a cannula on me.
After 2 attempts he gave up and said he would get the anethatist to come and do it. They wouldn't be able to come until 3am I was told so one of the night nurses had a go- and succeeded.
BUT the Dr hadn't prescribed any fluids so I had a cannula and no fluids to go in it! Eventually the night on call Dr came at 1am and prescribed fluids but only 1 litre over 6 hours (at home I would have it over 3 hours) so over the whole weekend I only got a litre of fluids instead of my usual 5.
Yesterday I had my outpatient appointment at St Marks. This had been arranged for months and there was no way I was missing it so Hubby came to collect me at 8.30 from PAH and off we went.
2 hours later we got to St Marks (bloody rush hour traffic). Saw a dr who works for the Surgeon A and after having fingers shoved up my arse, answering a million questions and being told to wait while he went to chat to the Surgeon A I finally know what the plan is.
Now I don't know if you know but during my op in July the Surgeon A made a bit of a boo-boo. He sewed part of my bowel to my vagina so had to go back, unpick the stitches and fix my vagina and my bowel.
Anyway, he won't do the next op until he knows that there's no way there could be leakage from one to the other which involves me being put to sleep while he fills one hole with liquid, the other with air (and then vice versa) and seeing if there's any little holes.
If there's not, he will do the next (and hopefully last) op. I'm scheduled to have this test done by the Surgeon A personally on 27 Feb as his diary is chokka until March so he's squeezing me in.
After we saw the surgical team we waited another hour to see my Gastro team. When they came down to outpatients we explained all the problems I'd had recently with the lines, the fact I've been in and out of PAH (and Nottinghams QMC hospital) and how the new line wasn't working and without a working line I wouldn't be able to go home for Christmas.
After he heard how they'd butchered me to get the Groshong line in (ok, slight exaggeration, but with no sedation it did feel pretty bad) and had 4 attempts to get the picc line in he said there was no way he could send me back there and would I consider coming to St Marks?
Would I? Er, let me think about that for a minute...of course I bloody would but I was told there were no beds and I was 10th inline for one when one came up.
He said not to worry, he would sort something out, even if it wasn't on his ward, because he wanted to see me everyday on his ward rounds and so long as I was somewhere in the hospital he could do that.
He told us to go and have a coffee but we said we had to leave as it was Big Fella's school nativity play. By this time it was 1.10pm and the play started at 2pm.
"Go, go" the Dr said. And promised to ring us when he had sorted me a bed.
And so began a mad dash back to the car park and from London back to Cheshunt.
God was on our side and there was no traffic, not even on the M25 and we came off the motorway with 10 mins to get to the school. Which would have been fine if there weren't temp traffic lights at the Box hairdressers (for non locals that literally 500m from the school) but they were causing a massive tail back.
We had already rang the school to say we were coming and could they save me a seat as if we arrived late there wouldn't be any and I wasn't well enough to stand. So I called again to say we were literally there but stuck in this bloody traffic and could they not start til we got there as Big Fella's bit was at the start of the play- he was the census man if you're interested.
So we got to the school to find the head teacher stood by the front door ready to give the nod that we'd arrived and they could start the play. She'd saved us seats but one of the mums had got us 2 seats on the front row. Big Fella's face when he saw us was just magical. Moments like that are priceless.
After school we went home so I could collect a few more bits as Hubby won't be able to come to St. marks in the week so I needed enough knickers and pjs etc and we had dinner as a family.
Then we had to go back to PAH to get discharged and collect my stuff. Even though they knew I was coming it still took them an hour to do the paperwork (why they couldn't have done it in the afternoon instead of when I'm sat waiting I will never know)
Then we drove to St Marks. I'd had 1 litre of fluids now since Sat morning and was on the verge of collapse so sorry if I didn't reply to texts, emails etc last night.
They got the on call dr out to me (within 30 minutes!!) and he prescribed 4 litres overnight so I've perked up a bit now.
I'm now sat in bed waiting to see the Drs on their ward rounds and see if they can get a new Hickman into me at some point before Christmas so I can go home and be with my family. The lists are full until new year but Dr 7 magicked me up a bed on the ward when they were all full so I'm hoping he can do a bit more magic and get me on a list for a new line this side of 2014.
Fingers crossed.
Love
NB
Comments
Post a Comment