This hospital stay has been, er, interesting. I was admitted onto Kingsmoore ward last Friday after coming into Princess Alexandra Hospital by ambulance. It was the ward I was on this time last year when I had my very first line infection so I recognised some of the nurses and I was familiar with the ward routines.
Over the weekend Hubby brought the kids up to visit. On Saturday Big Fella was proudly showing off his broken thumb which he earnt after a spectacular save in his football match earlier that day. On Sunday Big Girl was exhausted from taking part in a night hike with cubs on Saturday and then playing in a football tournament first thing Sunday morning. Hubby was worn out and dreading trying to do homework with the two of them: one unable to write and the other unable to keep their eyes open. I pitied him but wouldn't have wanted to swop with him for all the tea in china as they say.
Over the weekend cannula after cannula tissued so on Sunday they started to use my Hickman line for giving me fluids. They have been pumping fluids into me 24 hours a day as they thought that dehydration may have been the cause of my dizziness. I had to remind some nurses that it was a CVC line and not a regular cannula; that the line went straight to a vein in my heart so they had to be specially trained to use it.
On Monday night one of the nurses did a transfer without sterile gloves (a transfer is where you take the tube out of one bag of fluid and put it into another). She had already done it so I couldn't do anything other than hope it wouldn't cause an infection.
However on the same night shift in the early hours of the morning the pump started to alarm saying that there was an air bubble in the line. The nurse that came knew that she needed to handle the line aseptically (in a sterile way) because she brought a sterile pack with her but she put the pack on top of the bedside cabinet not on a sterile trolley! She flushed my line and connected me back up before turning the pump back on. But as she was clearing all the rubbish away the pump alarmed again. Huffing, she turned and grabbed my line with her bare hands, undid it and flushed the air bubble out.
"You've got no gloves on!" I shouted at her. "It doesn't matter" she replied.
I couldn't believe it. She knew that the line needed to be handled aseptically and knew that I was prone to line infections yet she had just grabbed it with her bare hands. Feeling shocked and upset I text Hubby. I didn't expect him to reply but my message had obviously woken him up.
Since then I've been putting up all the fluids myself and explaining to the nurses over and over again that yes, I know what I'm doing, yes, I do this at home and no, I don't want them to do it. This happens about 6 times a day and it's driving me a bit potty.
At the moment the only thing that I'm able to tolerate eating is custard- random, I know. It's been a bit of a challenge getting some of the kitchen staff to understand and some days they would try to cajole me into eating like you would a stubborn toddler. It's not that I don't want to eat; I would love to be able to. It's just that if I eat anything other than custard I end up in agony, doubled over and needing extra strong painkillers.
One day the kitchen hadn't sent me any custard up again so one of the healthcare assistants called down and spoke to the restaurant manager. She asked them if she should ask matron to come down and collect it. Needless to say the custard was sent up within minutes and they never forgot it again! Whilst it is a pain not being able to eat I was pleased I was only eating pre-packed Ambrosia custard pots when the lady opposite me found a flea in her mashed potato!!
On Tuesday I had a text from Hubby telling me to ring my parents. I knew why. I had decided not to tell them I had been admitted to hospital on Friday because I didn't want to worry them. I thought I would be in and out. But then I was still in on Saturday and on Sunday. And Monday. Each day I thought I would be going home and there was no point in them worrying when they were miles away and not able to do anything. They had rang my house phone and when Hubby answered my Dad simply said "she's in hospital isn't she?" Hubby ummed and aaahed but had to admit that I was. So I was in trouble with Hubby because he's been put on the spot and in trouble with the oldies for not telling them! Both my Mum and Dad say that they get a feeling when I'm not well and that they just know when I'm admitted even if I don't tell them.
It was good that they did know because the following night I rang them after speaking to the kids. Big Fella was ok and told me about school and the fact he couldn't write because of his thumb. Big Girl was a different story though. She was crying and could barely speak.
"When are you coming home Mummy?" she asked. "I don't know sweetheart." I had to tell her. And she sobbed. Big heavy sobs. "I need you mummy. I need you to come home". I tried to hold it together as I told her that I am always with her. She only has to close her eyes and I'm there. I told her that when she went to sleep she should imagine she's in a happy place- the beach she said (which funnily enough is my happy place too). I told her that I would dream of the beach and that we could meet each other in our dreams. "Really? Will that work?" she asked. "Oh yes" I told her and I think she believed me. If she didn't I think she wanted to.
I thought that she was ok when 20 minutes later I got a text from Hubby asking to ring Big Girl again. Like last time she was crying when she answered the phone. She couldn't do her homework and she needed me to help her and I wasn't there. Guilt surged through me. So I spent the next half an hour doing homework with her over the phone. Together we concocted a short story which had to include her spelling words for the week.
It was after we had finished that I spoke to my parents, telling them how hard it was to be away from them, that I hated hearing her cry and that I worried about Hubby having to do everything himself aswell as working full time in a stressful job. "I know" my Dad told me "it's horrible hearing your daughter crying down the phone, being far away and not able to do anything to make it better. It's horrible worrying about your family and being powerless to do anything and feeling guilty about it. Your Mum and I feel like that all the time". I'd never thought about that before. That as much as I hated hearing Big Girl cry, they hated to see me upset and in pain. I've often said that although this illness affects me, it also has an effect on the whole family.
Although it's not been the best of weeks I have had visits from two friends. It was nice to spend time chatting and catching up with their lives. One of my friends had just come back from Venice and it looked beautiful. It's definitely one of the cities that I want to visit with Hubby (but without the kids!) I think I would need to be quite a bit better than I am now because she told me there are over 400 bridges and that you do a lot of walking to explore the city and I think me and my numb leg wouldn't cope, even with a stick. But Hubby if you're reading this here's an idea for my next big birthday!
Continuing along the theme of good things that have happened, a few weeks ago a brown envelope landed on my mat. Brown envelopes generally enclose a bill or another benefits form to fill in. This one was regarding my benefits but contained good news for a change. I had been awarded the highest rate of ESA which although isn't going to make me rich (and rightly so) it does mean that I won't have to worry so much if the school say they're going on a trip or that dinner money needs paying. So that's one down, one to go. I'm still waiting to hear about my PIP application so fingers crossed that will be good news too.
To pass the time in hospital I read the book Life of Pi. I knew it was a movie but I hadn't seen it so didn't really know anything of the storyline other than it involved a man, a boat and a tiger. I have to say it was amazing! I have even started to reread it because the ending was so unexpected that I feel like I need to read it again to fully understand it. I think I will definitely be watching it on DVD once I get home.
There has been some confusion over which doctors are managing my care. Initially I was referred to the surgeons although I have no idea why, and neither do they. They referred me over to the Medics who aswell as getting St Marks involved have wanted to do a particular test on me. The medical dr seems to think that my very low blood pressure and blackouts could be due to a lack of cortisol. The test she wanted to do was where they take your blood, give you a dose of medicine and then take it again 30 minutes and then 60 minutes later. This test would determine whether I have Addison's Disease and need to be prescribed cortisol because my body isn't making enough of it itself.
I was supposed to have the test yesterday morning but the doctors came and told me that they didn't have the medication in the pharmacy. I believe they have since tried to order it but it's not available from the manufacturer so I'm being sent home and will have the test done as an outpatient. It has also been arranged for me to go to St Marks next week so that the doctors there can review how much fluid I'm having and whether any of my medication needs to change. So I've just finished packing my bags and am waiting to get my discharge summary. Then the same friend that was there last Friday at the GPs is coming to pick me up and take me home. I can't wait to see the kids and give them a big cuddle and go to sleep in my own bed tonight snuggled into Hubby.
NB x
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