It was our dialysis delivery day today and normally I moan my head off about having to stay in but today, I was so glad just to be able to sit down at home and not be waiting in a hospital, doctor’s surgery, chiropodists, or chiropractors. Huzzah! I am glad all these places exist and look after us so well, but it is nice when you don’t have to go to them. I didn’t have much of a sit down as Jasmine kept throwing up everywhere and Calista was a bit grizzly too and vomited a whole feed back up. Neil has had an upset stomach which started the other night and has left him feeling ill and weak so, I think they have all had a bug, as there was a lot more vomit than usual all round. Fingers crossed I don’t catch it as I was in charge of dialysis and giving Jasmine her epo injection (boo hiss) this evening.
As Jasmine’s dialysis regime has changed, the Baxter man arrived with 21 boxes of dialysis fluid. Our living room is now one big dialysis store room and we are out of ideas about what to do with them. So, they are just piled up against one wall. After the lovely Baxter man left, all four of us went for a lie-down. Unfortunately, I was near the phone which kept bloody ringing with annoying people offering me debt collection schemes and wanting to do surveys on me.
This week has been the busiest, but all the appointments went quite smoothly and we were really lucky that we didn’t have to wait too long for any of them. On Tuesday my six-week check-up went well and afterwards I came straight home to pick up my girl Jasmine and give her a big cuddle. I have really missed picking her up whenever we need a cuddle and having to ask Neil to put her on my knee and take her off again has been a bit of a drag all round. She has gotten so big and is quite heavy, but it is lovely to pick her up whenever. I know that I am getting stronger as I can almost do all the exercises the chiropractor has set me. This evening I got my little carpet cleaner out to wash the carpet, although it is a bit of a lost cause now with all the vomit stains everywhere, but since Jasmine rolls about a lot on the carpet, it is nice to know that it is clean for her even if it looks a state. I must be recovering if I have the energy to scrub the carpet.
On Wednesday, Jasmine’s parathyroid scan seemed to be ok. We won’t find out the results until the next clinic but the sonographer said that if you can’t see the parathyroid on the scan, which she couldn’t, then all is well. We walked down to GOSH as we had to travel in rush hour and two buggies on the tube can be a bit of a challenge. After lunch, Calista got a clean bill of health at her six week check-up. And late afternoon we even managed to fit in some Abbot food pump training. The lady came to our house which was nice. After she went Neil and I lay on the sofa stuffing our faces with chocolate biscuits to build up the strength to do the machine and the dressing and all the evening chores, as we were really tired by then.
On Thursday morning, Neil went round to the doctors to get various ailments treated. I think he is run down after his heroic non-stop dialysis duty and generally looking after everyone. The poor man needs a Bob Martins, as my mother would say. After the doctors he went to the chemist to pick up all of our supplies and struggled home under the weight of the massive maxijul tubs that Jasmine uses. And then he went down to the concierge to drag back our new food pump and all of its accessories. The concierge came with him as there were a lot of boxes.
We also have some new style reusable medicina syringes for Jasmine’s medicines. You can use them seven times – it says seven days on the box, but we are interpreting this as seven times, as I am sure they won’t spontaneously combust at the end of the week. You have to wash them before you can use them even though they arrive in a sealed packet. How to do this and whether you should sterilise them before use is just not clear, but they do have jolly pictures on the side of the box. So, if you draw up your medicines one at a time just before you give them, then life is going to be one big cycle of washing your syringes and sterilising them before use, or worrying about whether you should have sterilised them if you are just washing them. Mmm! Not great when you have a load of other stuff to do. After a bit of a dither this morning, I washed a big handful, sterilised them and then drew up some Ranitidine. My top tip is to separate them out, and put them in a colander and fill the sink up with Fairy Liquid and let them soak for a while and then rinse them out – no hassle since they are in the colander – and then put them in the steriliser. Ours is one of those microwave steam ones which are really good.
This morning, Jasmine put her arms out for Calista. I put Calista into Jasmine’s arms and Jasmine hugged and kissed her, and then job done, Jasmine got a bit distracted and poked Calista in the eye.
Jasmine is also totally distracted by Calista’s new fabulous booties (thanks Nicola) and funky feetfinders (thank you Barbara) and pulls them off poor Calista’s feet.
I think that the new dialysis regime is doing something as Jasmine has been waking up at 6am instead of 5am. That extra hour is just magic, as are my girls! (And Neil of course!)
Hiya Ruth, Lovely to have you back. Your girls are beautiful. Keep looking after yourself and the lovely Neil. You are both doing an amazing job.
If you haven’t done so already you might want to register with the telephone preference service. http://www.mpsonline.org.uk/tps/ Its free and stops nuisance calls immediately.
Lots of love to you all. Jen xxxx
you are going to have to make some great cardboard castles and tables out of those boxes! We used them all to store the hand me down clothes in for easy stacking! Too bad on the bug, ugh, that is always so annoying in the summer! Jasmine looks great! Any news on a date yet? Sending our love your way!