[Chirley]

Mum has been in hospital for just over three days now and the extreme breathlessness she developed after her blood transfusion has not improved. In fact she is worse than before her admission and I'm starting to wonder if giving her two units of blood within 6 hours when she was in complete renal failure was medically a very poor decision.

I have asked on numerous occasions to speak to any member of her treating team but neither my father nor myself has spoken to a doctor since her admission. I'm getting quite angry at the lack of communication. We have not been told her official diagnosis let alone, investigations, treatments or prognosis. Anything we do know is because I have parked my wheelchair in the doorway to her room and obstructed the nurses exit until they answered my questions.

I finally got my power chair and caught a taxi to the hospital by myself today so Dad could stay home and have a rest. Mum couldn't talk much because she's so breathless. But she did tell me that this morning was the first time anyone had showered her or cleaned her teeth! Because she has a history of vascular disease and DVT she is supposed to take Asprin but they have stopped all medications so they have ordered her to wear compression stockings. When I got there today she didn't have the stockings on and I found out that they had not been put back on after her shower 8 hours prior. She also had a small 100ml bag of saline with about 30mls already used still hanging on the pole but not attached to her (because of the fluid restriction) they only use this fluid for a slight dilution of her antibiotic.

I worked in Infection Management and was part of the team that wrote the hospital policy which states that once an IV tubing has been disconnected from a patient it has to be discarded and a new tubing used each time. There was an obvious intention to reuse the tubing hanging there and I stated quite plainly that I would not tolerate that tubing being reconnected. The nurse simply rolled her eyes and walked away.

When Monday morning comes I'm going to ring the ward and tell them that I insist on having a conversation with her treating consultant after which I will be having her transferred to the other hospital. If I don't get to speak to her doctor by lunch time Monday I will be contacting the patient liaison officer and placing a formal complaint about lack of communication and active obstruction in finding out information that we are entitled to know.

I'm so upset that it's 3 in the morning and I haven't been to sleep yet. Some of the reason for not sleeping is because Mum is sick but a lot of it is because I know so little about what's going on with her that it's playing on my mind.

My big brother did come into town, took my Dad to see Mum at the hospital, then left again. I don't even know where he is living at the moment because he owns a number of houses in three different cities and towns and moves between them whenever he feels like it. He rarely answers his mobile phone and is very difficult to contact. Oh well, so much for the prodigal son returns.

The stair lift is being installed into Mum and Dads house next week (I negotiated a pretty good deal, if I say so myself) and the builder is coming on Tuesday to redesign the upstairs bathroom and toilet so that it will be easier for them to use. (Dad had a small fall in the bathroom this morning too and hurt his elbow).

Life is very busy at the moment and physically I feel very run down. If Mums care isn't sorted out in the next week, I'm going to have to cancel my
treatment at a time when I need to be as well as I can be but I can't see any other way to do it.

Cup of tea time.

Regards

Chirley