Today has been a bad day... a bad bad day!
Ironically, Nicola has been relatively good today. Although she hasn't really settled and she still is in quite a bit of pain, she is all in all doing really well.
Today was Mummy's day to fall apart.
I don't know what it was but the day just really started wrong. From the moment I woke up which was far, far too early, everything has just grated at me.
I decided I was going to splash out and be extremely luxuriant after yesterday's fiasco's and I went to get myself bacon and eggs from the cafe. They had no fried eggs, only scrambled, and their scrambled eggs taste like crap... so after much cajoling, I managed to convince them to make me ONE fried egg. Not sure why they wouldn't make two, it wasn't that much more difficult than one, but hey, beggars can't be choosers, right?
What they gave me, well, I guess it counted as fried. I'm sure it touched the hotplate for maybe a second or two! Then it was slopped in on top of the bacon and made everything all oooey.
The nurse we had this morning made me feel like I was completely incompetent because apparently I am not allowed to give my child her medication or weigh her because I might do it incorrectly.
Uh, hello? Who do you think gives her medications when she's at home?! Yeah, that's right... ME!
I got Nicola up and sat her in her wheelchair for her breakfast and to have a little bit of a play because she seemed to be a little happier this morning. After her breakfast she started to get cranky and irritable, I turned around to make her bed up and then turned back to get her and she's twisted herself uncomfortably, arched out of her chair, and ripped her Mic-Key button straight out of her stomach, balloon still inflated and is quite happily leaking stomach contents all over the floor.
I grab her and put her on the bed and clamp my hand over the stoma site and realise that I can't reach the call button, so I ask the mother from the next bed to help. She pushed the call button... and we waited. And she pushed it again, and we waited... and she pushed it again. Then she walked out in the corridor and to the nurses station, and there was not a nurse to be found anywhere!
Finally we managed to get the ward receptionist who managed to find a nurse who came in. I asked for a 10ml slip tip IV syringe so I can deflate the balloon and get it put back in. They can't find them. They don't have any on the ward. She will page a wardy to go to another ward and see if they can spare some.
Uh... you're kidding me right?
A good 10 minutes later they manage to find some in the store room and I can deflate the balloon, put it back in and sort it out.
Not a drama!
Well, at least not much of a drama!
Then the stoma nurse has to come in and check it, after all, I'm so incompetent that I might not be able to do that properly either, even though I do it regularly at home! The stoma nurse see's the pressure mark on the back of Nicola's VP shunt that I have been telling them about for the last 4 days and she tells me off because Nicola's blood counts are about to drop which means she's prone to infection and I can't leave it go on like that! I tried to explain that I have told the nursing staff repeatedly over the last four days and they weren't worried about it, and she cuts me off and then has a go at me over the length of Nicola's nails and how I need to take better care of her and cut them properly.
Then she tells me that they're going to cut off all Nicola's hair so that they can put a dressing over the shunt site. I get upset and object. I tell her that we know that Nicola is going to lose her hair in a few weeks anyway and I want to keep her pigtails while we can. If they want to they can remove the hair around the shunt, but they don't need to cut off her pig tails which are on the top of her head.
She tells me off and tells me that I have to start putting Nicola's best interests first and walks away.
Then the Nursing Unit Manager comes in and has a go at me again about the mark on the shunt site and then the length of Nicola's nails, and finally about me not wanting to cut off her pigtails.
She tells me that it's going to happen anyway and again I need to start putting Nicola's best interest first.
The Stoma Nurse comes back with a trolley at which point I pick up my bag and walk out with a few choice words and leave my husband to deal with them, making it very very clear that if they cut off her pigtails they WILL know my wrath...
Then I walk down to the playground, hide behind the equipment, phone my mum and cry.
Finally my husband comes and finds me and reassures me that it's ok, they didn't cut off her pig tails, and I'm really not a bad mother at all... and I go back up.
At which point the oncologists come around and tell me that the dietitian has been telling them that Nicola is not getting enough nutrition and she needs to be put on formula, which I am vehemently against, and she knows it!!!
Which really made me angry all over again because it was such a deceitful and underhanded way to go about it!
Then, to top it all off, they had to remove the peripheral line that they put in yesterday, all through complete incompetence. When the line was put in the medical staff forgot to write up the flushes to keep the line open. I asked about it several times today and kept getting ignored. Finally this afternoon one of the nurses came and tried to flush it and it had been tissued.
She was put through all that pain and trauma for absolutely nothing! The line was wasted because they couldn't scribble a few words on a piece of paper!
By the time the social worker came around this afternoon I ducked out and managed to dodge her... if I had had to deal with that as well I may have just lost it!
I have spent most of the day alternating between wild anger and sobbing hysterically and all in all it has just been a really, really, really bad day.
Tomorrow can only get better, right??