We went on an epic journey yesterday. We were supposed to just go to clinics in the morning but you know how sometimes things get out of hand.
We got ready to leave at 8am, get on the tube and then be near GOSH for breakfast in a cafe. But on our way out of the door, Jasmine threw up (she is still full of cold and mucus, so a cough on a full tummy can be a bit dangerous). So, by the time we got to the tube (now on public transport hurrah!!) it was after 8.30am, which normally means very busy. Incredibly, it was worse than that, the line was part suspended and it was running with severe delays and no one could physically squeeze on. One woman with a baby in a buggy said, as she came back up the lift, “It is a hell hole down there.” I think she watches too much Eastenders.
After half an hour of trying to get on a tube, we went back upstairs and struggled out of the station (loads of irate people were making themselves even later for work by queuing up to get their £1.10 back for being on the platform). We went for a coffee and croissants next door. Jasmine could only have water by then. It would have been really tough having a two hour gap for the Tacrolimus just at that moment with us starving, if she actually ate something, but she sat there putting the croissant to her lips and then gave it to me and clapped when I ate it.
I love eating and someone clapping encourages me even more, which isn’t great. I have lost weight these last weeks, only because I haven’t had time to eat – as I have found over these last two years chocolate biscuits are a great comfort – and being in hospital so much means I have been away from the biscuit tin. So, I was a bit dismayed to see myself looking such a porker on the above photo and blamed Neil for making me look fat. He said that I am a bit of a Porker-Firth and should Photoshop myself thin. I would if I had the time!
Anyway, eventually we got back downstairs and on the tube, and two men very kindly helped us with the buggies at the other end. By the time we got clinics it was after 10.30am and then there was a bit of a queue. Thursdays are busy as there are loads of transplanted kids, which is lovely to see.
We had one of the transplant surgeons do our clinic, the one who had done Jasmine’s last surgery, which was great but I was curious and asked if it wasn’t a waste of his time, as I felt a bit trivial asking him about prescriptions and the like. He said that if he didn’t do clinics he wouldn’t get to see his patients and he would end up as a technician plugging in kidneys and not interacting with people. He still follows some of his patients, even 20 years later. I was so touched by this answer. It makes me want to rush out and do something really useful with my life.
Afterwards, we went to Yo! Sushi. Jasmine loved it. She figured out how to split the wooden chopsticks and to pick up food with them. She is a genius. She loved the conveyor belt and was very excited by it all.
Calista was less impressed with the whole thing.
We were in there a while, and I gave Jasmine some milk. Unfortunately, she coughed during the feed (she is totally tube fed at the moment) and threw up in my miso soup. It was funny as it looked the same with a bit of vomit in. I suppose that isn’t funny at all, but after seeing her wound ooze discharge, and bloody urine, and bits of her bowel pop out, and various bits of her on ultrasound scans and holding her whilst she is having a load of blood pulled out of her tiny veins or being put to sleep before major surgery, and Neil having arrows drawn on him where they are removing his major organs, a bit of vomit in my soup is light relief, I can tell you.
These last weeks have been something. I got a bit weepy the other day as we were relaxing at home for the first time in what feels like forever. It is still all new with different meds and a new routine. And it is disappointing that Jasmine won’t eat or drink anything and we are tube feeding her. But it is a good day when you are at home and all you have to stress about is the NG tube. I think anyone who has had all the surgery that she has wouldn’t be up to eating.
She is back to shuffling frantically and dancing and generally being her funny, beautiful, clever self which makes me want to hold and kiss her all the time, which she doesn’t want, of course. So, I give Calista some loving instead, because she is totally into being held with her teething and her dribbling, and a bit of vomiting too since she has had the same horrible mucus cold. Unfortunately, she wants that all through the night too. I am so tired at the moment, I could sleep on a washing-line (as my Auntie Yolande used to say).
Once we left Yo! Sushi we had some shopping to do and then went for a coffee and so by the time we got home it was after 4pm. And then we had to wait (or try not to wait) for GOSH to ring up with the blood results, which is always a bit of a worry. As one of the last times they rang up, we had to go into hospital immediately, which was great from a care point of view, but made me want to faint with fear.
But yesterday, they rang and said that we didn’t have to go back until next week which was just marvellous. And then we had to run about doing a load of stuff and we got the girls to bed and then they woke up three times each and went back to sleep and we finally got into bed at midnight. And then my night shift began with Calista. But we had a good night and she only woke up three times.
But I am sure once we get through this phase, things will calm down and everyone will sleep through the night and I won’t feel absolutely shagged out of my tiny mind and look so haggard. Neil looks great, much better than he did, and he is back to his usual organising self, which is brilliant (and extremely annoying). I absolutely adore him and will let him organise me into the middle of next week. He is the bravest man.
