Jasmine has now been home nearly 48 hours. It is fantastic. She has a a rock and roll lifestyle lying in pools of her own vomit and urine and taking lots of drugs. We are the lackeys who clean up after her. I am just waiting for her to throw the TV out the window. She is so cool and has just vomited as I type this. Luckily Neil has taken charge of the cleaning up operation.Yesterday, we felt like we had so much to do we forgot that we were actually doing it for Jasmine as our whole day was spent doing things and not nursing her half as much as we would have liked. This was how our day shaped up:
Woken up at 4am by an alarm on the dialysis machine. Put Jasmine on her side so that she would drain some more and stop the machine making a noise. Went back to sleep. Woken up at 5am by Jasmine being sick. Changed the sheets and her nappy and tidied her up, left her off her feed pump for a bit. This kept beeping so eventually put it back on and then was woken up at 7am by the food pump alarm going off. Disconnected the food pump and put some medicines down her tube. Lay there for a bit and then gave Jasmine more medicines at 8am. Went back to sleep and woke up at 9.30am. Gave Jasmine a bottle and some medicines. Had some breakfast and a shower and then Jasmine threw up everywhere so tidied her up.
The community nurse came round at 11.30am to give Jasmine an injection and bring us more syringes and forms and things. She left at 1pm. We had some lunch and fed Jasmine. Then we went to Argos to buy plastic containers to put all of Jasmine’s stuff in. Then we bought Jasmine a sunhat as it was so hot and some cool pink trousers and a lovely summer dress that I couldn’t resist.
It was a lovely day so we went to the Landseer Pub to have a shandy. Neil and I have turned to the drink to get us through as Jasmine’s drugs – magnesium carbonate, folic acid, calcium acetate, etc., don’t really get you high. Jasmine had milk. Then we got the bus home and tidied around the flat – we are gradually getting rid of all the delivery boxes and putting things away. We then changed Jasmine’s PD dressing (sterile handwashing total = 4 minutes), set up her PD machine (sterile handwashing total = 5 minutes), did her observations, fed her and then tidied all around after she vomited again.
We put her on her machine (sterile handwashing total = 5 minutes) and then we had some dinner (because I am a domestic goddess with my home-made bean lasagne) but the alarm went off several times which I went and dealt with as Neil thought it was next door’s microwave. Then we drew up her medicines (she has 20 syringes a day) and made up her feed for the next 24 hours. We did this watching House and Grey’s Anatomy but we didn’t really need to watch them as we are living through our own medical drama. After several cups of tea we were cross-eyed and started getting ready for bed. Jasmine was sound asleep but I thought I would check her nappy, which was just as well as she was lying in urine-drenched sheets. I changed her again and then she filled her nappy so I changed that and got into bed around 2am.
Neil got up around 4am as he heard Jasmine wretching and tried to wind her. He managed to get some wind up after finally deciding to aspirate her tube and get wind out of her tummy that way. Then we put her back down after some nappy changes. At 6am she vomited again so we took her off the feed pump and began the day all over again.
She doesn’t normally vomit this much but her feed mix and her dialysis program changed the day she came home so she might take a couple of days to settle down. Fingers crossed it does, as most pop stars would tell you that the rock and roll lifestyle is not all it is cracked up to be. My top tip to them is: lie on an A4 ring binder so that you are propped up a bit and less prone to vomiting.
Well I’m absolutely shattered after reading your day’s events,soon you will be doing it all blindfolded.
I know that it must be great just to be home as a family
Have a lovely weekend, weather looks good.
Barbara XXX
Auntie Hilda sends lots of Love too.XXX
You are absolutely heroic, the pair of you. Glad to see you’ve got your beautiful daughter back home finally. Enjoying your blog – its very entertaining and I’m learning loads of technical stuff to boot! Keep up the great work. Lots of love to all three of you. Jen A xx
I am a devoted fan of your blog and your courage (RSS technology helps a lot in keeping up). Jasmine is so fortunate to have parents such as you!