It is Thursday already and all I can say that I have done all week is feed Jasmine. I really don’t remember doing anything else, except push the NG tube back down her nose everytime she coughs or sicks it up, and then put all her clothes and mine in the wash. I am so used now to feeling tired and fiddling with the NG tube and doing the washing that it is hardly worth mentioning.
I could do with a bit of a kip now but so far Jasmine is refusing to go to sleep and is a bit cross, so I am pushing her back and forward in the buggy with my foot whilst typing this. She is listening to Franz Liszt’s Hungarian Fantasies and it seems to be doing the trick. She is starting to sing along. She has been doing her singing since around 6am this morning after Neil fed her, which was great and was quite cute for the first two hours, and is definitely better than the screaming and crying she was doing just now.
Clinic was good on Monday. Jasmine’s blood pressure is down and her constipation under control, so we can concentrate on getting some weight on her. We are on operation ‘grow the Jasmine’.
At clinic, the nurse swabbed (and cleaned) Jasmine’s PD exit site and her nose to check for staphylococcus aureus which is a bacteria that lives on the skin and up the nose and could infect her PD exit site if it got transmitted there.
I keep my nose clean with a neti pot. I love my neti pot. I don’t know if it does anything for bacteria – I would like to think it did – but it definitely stops congestion and reduces colds. Neil bought me it for Christmas when I was pregnant and I use it everyday, Neil uses it sometimes as he likes to copy off me (when I said that I was going to type that last night he said to say that he has a mind of his own – little does he know that it is only when I let him).
Anyway, at clinic after the swabbing and site cleaning, it was time for Jasmine to produce a urine sample. We had noticed that since she has been on a stronger dialysate mix, her urine output has decreased, but still expected it to be enough for a sample. So we hung about GOSH for a couple of hours and had lunch (panini and latte, of course) in the hope that she would fill a little bag. But alas, it wasn’t to be. There wasn’t enough for a sample and eventually we toddled off home. It is funny, we had gotten down to GOSH that morning at 9.30am and we still never managed to leave the place until gone 2pm.
I was a bit alarmed about the urine but apparently it is common in children on dialysis for their urine production to decrease. The dialysis is doing what the kidney does so the kidney is no longer needed and stops working. When it was producing urine it was just throwing away all of the good stuff that the body needed and was only useful from a fluid management point of view. When I asked the clinical nurse specialist yesterday whether it better to have it producing urine or not, she said that it is better to have urine even if it is throwing away stuff, but since we can’t choose we will manage. She said it with such confidence that it really cheered me up.
I was on the phone to her because Jasmine seemed to be dehydrated. When I took her off dialysis yesterday morning, her blood pressure was 66. And last night going on it was 80. The dietician has changed her feed again adding two extra scoops of maxijul and Jasmine hates it. So, I have been tube feeding her more than usual and she has been vomiting more than usual. That could be because she is too dry (dehydrated) or because of her feed.
Last night we went back to weak dialysate bags for the first time in over two weeks and she still took a load of fluid off. So we will see how that goes and then in a couple of days time we will reduce the protein (vitapro) in her feed as her urea is too high and that could be making her feel sick.
The dietician is sending me some small blue scoops in the post, as that is how they like to communicate (big blue scoop, small blue scoop, yellow scoop). I measured these scoops out of curiosity and as I guessed, they equate to tablespoons -15mls, and I guess the small one will be a teaspoons -5mls or half a tablespoon or something. Actually though, the big blue one has 50mls written on it. So it might have been easier to say reduce vitapro to half a tablespoon (7.5mls) or something, but no I have to wait for the small blue scoops to arrive. I would much rather that they speak in terms of mls and grams and calories per kilo instead of blue and yellow and big and little. Good job I do not have the type of colour blindness that cannot distinguish between blue and yellow.
The dietician seemed unimpressed that we have stopped Jasmine’s overnight feed and have taken to feeding her more sensibly. She kept saying things like: ‘Why don’t you start the overnight feed at 10pm and then one of you stay up until midnight and then switch it off? The other one could go to bed.” I didn’t reply: “Because we live in a one-bedroom flat.” She didn’t stop there though and spent ages giving me ‘advice’ as if I was some sort of idiot who hasn’t tried all the combinations over the last 10 weeks. I get really angry every time I think about that conversation.
Dieticians should spend a couple of days and nights looking after vomiting babies either on the ward or better still in a patient’s home so that they can see just what vomiting all night and I know it is hard to see the little one vomit but you just have to get it down them look likes. All of the dieticians seem like very nice people who obviously want to help, which is demonstrated by their choice of vocation. But on Monday I was left feeling that they are so far removed from the ramifications of their advice and the practicalities of NGs and feeding and vomiting and beeping food pumps, that their advice is not particularly useful nor necessarily pertinent.
I also interpreted the dietician’s comments to mean that I had some sort of NG tube aversion, which would lead me to not feeding Jasmine or using the tube. It is in the literature that the NG is a catch-22. You put it down to improve feeding, but then it puts babies off feeding as they have great lump of plastic stuck in their throat and she even said herself that you only have a ‘small window of opportunity’ to encourage babies to feed well. I was just trying to ascertain the best way of optimising the time Jasmine feeds well so that she won’t forget and have a poor appetite in later life. I will just have to find better ways of phrasing my questions so I don’t sound like a mad anti-NG mother.
And I should actually be giving thanks that I can spend so much time thinking about feeding etc., this week instead of worrying about white cell counts, constipation and high PTH readings. I am grateful for that.
One good thing I thought of the other day and ran it by the team was the way we add calcium acetate to Jasmine’s feed. We grind up two tablets and mix them with water. Then we draw then up into 1ml and 2ml syringes to add to each feed. Already, as we are drawing them up we can see in the mix that the calcium is not evenly distributed amongst the syringes and often left in the bottom of the pot. Then by the time we come to use the syringes, the calcium has dried and caked around the top making it impossible to get the calcium into the feed. So, I decided that when we are mixing up her overnight feed and adding the SMA/maxijul/vitapro powders to water, to add in the ground up calcium acetate tablets, then blend them altogether.
I am a genius. It works an absolute treat, and saves us drawing up six syringes a day and carrying the syringes about ready to add to the milk. Neil was very impressed with me as he is on meds duty at the moment. That is a saving of 180 syringes a month and quite a bit of time.
Oh yes, could penta please make some recycleable syringes and do their bit for the environment and the NHS? All these single-use only syringes might be making you lots of money but it is not on!
Right Jasmine is now snoozing. I am going to close my eyes too and breathe deeply and remember that everyone is trying to help and all advice is meant well and I don’t know it all – I just think I do (I can see my parents nodding their heads in agreement).
And when you close your eyes and breath deeply remember all the people who are thinking of you and sending lots of love. You are doing great work – GREAT work. Will think of you now wrestling over who goes first on the aqua-nasal-flossing pot. You hippies 😉
Hi Ruth – Invite the dietitian to spend 24 hours with you and Neil. Have her bring her own cot and Neti Pot tho