Jasmine had her 3rd set of immunisations yesterday and was grumpy last night. Today she had her usual epo injection making a total of four injections in the last 24 hours – two in each thigh. My poor baby is totally fed up and cross today and a bit sleepy.
She has high blood pressure too. The results of the ambulatory blood pressure cuff proved that she has had a consistently high blood pressure for some weeks now. She will be getting her heart scanned on Monday to see if it is working too hard. A stressed heart can lead to all sorts of complications such as enlarged or dilated chambers. Looking in Neil’s cheery pediatric dialysis book, I found out that a child with ESRF is more likely to die from cardiac arrest than kidney failure. I nearly had a cardiac arrest myself reading that. Lucky for us, they are on the case down at GOSH. So for the rest of this week Jasmine is on one extra strong dialysate every other night until her blood pressure comes down and we will wait to see what they can see in the echocardiagram.
Jasmine is also constipated and has been described an extra laxative PRN (pro re nata which means as it is needed. We are so up on our nursing terms now). It is important that she keeps regular otherwise it can cause problems for the catheter. In the worst case scenario, if she got too bunged up, the catheter would flip upwards in the peritonium and stop working (draining and filling) and then have to be removed.
We have given up lying her down to let her kick her legs as it makes her vomit. I guess we will only be able to do that when she has an empty stomach. On Tuesday we took her to RIBA and laid her flat on a nice big chair: a Mies van der Rohe no less and she sicked up twice on it. He is obviously not her favourite architect then. Good job we were armed with a large supply of baby wipes. They clean up everything. Heaven only knows what they are doing to her bum.
Yesterday we spent the day trying to get a light fitting fixed in the bathroom. It has been out of action for over a week and Taylor Wimpey our customer care people never got back to us, even though Neil phoned them everyday. I decided to keep phoning phoning their offices until I got a result. Eventually, the receptionist gave me an alternative number which led to me being given at least 10 different phone numbers to call until I reached their head of all heads who told me that they have made everyone redundant. Normally, I would be sympathetic but at that point I said that I just didn’t care (and felt quite bad about that afterwards).
After my phone-a-thon, the TV man came round as we don’t get a good reception as the aerial is shared across 400 hundred flats and everyone goes into the cupboards and tweaks the aerial amplifiers so as one person gets a better signal, another person loses channels. This has been yet another irritation. And since we have to stay in for the next year we need all our channels! He didn’t fix it *sigh*.
Ours is a very small flat, and most the time I feel that we are very lucky, as I can’t imagine what it is like to live in a house with a garden etc., it would be impossible to keep all that going and do dialysis. I guess most things are manageable, but when you are tired after another night of dialysis and worrying about a poo shortage, when things don’t get fixed, it just seems worse.
In fact Neil has just thrown a big fit because someone has sent us a letter ‘Neil Fish and Ruth Staller’ but not paid enough money on it so we will have to go to the sorting office and pay £1.27 to pick it up (the last time this happened it was my brother’s Christmas card and I was very pregnant and unimpressed). We will have to physically go there because Neil would have register on the Royal Mail website as Neil Fish to pick up his mail and he refuses and thinks that they are all a bunch morons. I just can’t type this for laughing so hard (I don’t know to whom he is referring) as he is jumping up and down like Basil Fawlty. So this had better be a good letter or the sender is for it.
One good thing that happened yesterday was that we had a designer come round to talk about storage solutions for our flat. He had lots of ideas and it was great. So now we are in the process of turning our flat into the TARDIS so that should make us feel better.
Another good thing that happened was even though Jasmine had her jabs, she didn’t run a temperature and slept all night. She didn’t even begin to vomit until 5.30am this morning, so hopefully her vomiting has settled down a bit.
At about 8am this morning, she woke me up by gurgling and cooing and singing in her cot for the best part of an hour, waiting for her dialysis to finish and for her feed to begin. She is really funny. And then she didn’t vomit at all at 9am feed for the first time, in what feels like, weeks (although she spoilt it by having a small vomit at 11am). We are wondering if it is because she took off more fluid last night and so has more room for milk. Speaking of which it is time for her feed.
[…] the light fitting in our kitchen – so we might have to crack open the champagne. The one in the bathroom will have to wait (what is three months between customers and customer care teams). We think Trevor our handyman had […]