Jasmine Stalker-Firth

It is 5am. Jasmine, Neil, and I have just come back from a stroll under the stars on a crisp winter’s night. And it is the first time Jasmine hasn’t been connected to her machine on a night since she was 17 days old.

Neil and I had been up chatting late this evening, even though we knew shouldn’t have as we are always exhausted the next day. After midnight we started getting ready for bed and I changed Jasmine’s dirty nappy. When I looked at her catheter it looked slightly different. Normally there is a thin blue stripe which runs down the whole of Jasmine’s line which comes out of her tummy and is connected to the catheter which we open and close everyday. Tonight, or this morning rather, the thin blue stripe on her line had a white gap in it.

We took a picture of it and blew it up on the computer to see it better and then we shone a torch on the white gap. It was a split! We rang the ward, disconnected Jasmine from her machine, and ordered a taxi.

We got there around 1.30am and the nurses inspected the split and decided that we should wait a while longer to make sure that we got a good sample from Jasmine’s peritoneum.

At 3am they snipped the line where it was split, soaked it in bettadine (antiseptic), attached a brand new catheter and took a sample of her peritoneal fluid and sent it off to the lab. We studied the left over piece of line and the nurses said that it would have definitely split by morning and it was great that we spotted it.

At 4am, the lab results came back – Jasmine’s white cell count was six and we were cleared to go home. Fantastic. Our lovely nurses packed us up with forty-eight hours of dialysis fluid full of antibiotics and heparin and now we are back home drinking tea. Neil is sorting out the washing and I am blogging – the things we do to relax.

We are a bit tired and teary but very proud of my obsessive-compulsive dialysis. Jasmine is snoozing in her cot and we have the rest of the night off dialysis. We are officially on dialysis holiday until 4pm tomorrow and thrilled to be in our own bed tonight.

We made a Christmas cake yesterday, which is something we do every year and is a part of our getting ready for Christmas ritual. Jasmine thought the whole thing was very interesting and kept sticking her hands into things. Neil was worried at one point as he was stirring the cake mix and Jasmine, who was sitting too close for comfort, was wretching a little bit. Luckily, nothing untoward happened and for the whole afternoon our flat smelt delightful as the cake baked in the oven.

This week we will be buying Christmas Cards from Kids Kidney Research who have some lovely cards for sale. Kids Kidney Research raise money to fund kidney research for babies and children in the UK.

Most people don’t realise that a good working kidney transplant will only work, if you are lucky, for 10-15 years, after which time it slowly starts to fail. If you are fortunate, you go are back on dialysis and the transplant waiting list. Research which explores new therapies to heal damaged kidneys or correct the faulty genes that cause kidney disease gives us all hope for a better future. So buy some cards or better still become a kidney donor!

This morning Jasmine and I watched the National Service of Rememberance at the Cenotaph in Whitehall on the Beeb. I was a bit weepy thinking of all the young people who have lost their lives over the past 80 years and gave thanks that the people I know who went off to war, came back.

We bought Jasmine a lovely fur coat, fake of course as she is one ethically-minded baby, to keep her warm in winter. She looks very fetching and so I couldn’t resist putting a picture up her.

We’ve been out to the shops this morning so that she could model her new coat and now she is flaked out having her afternoon nap.

Once it gets dark this evening we are going to take Jasmine to the top of our building to show her some fireworks and have fun on her first bonfire night.

We went to clinic yesterday morning and they seemed pleased with Jasmine’s progress, which was great as I had been stressing about the fact that Jasmine has lost weight this week. However, she has grown about two centimetres in a month, so that is a good amount. She is back on the 2nd centile, as she was slipping off the chart and it was a bit of a worry. There was another baby getting his bloods done just before Jasmine and he was huge in comparison to my little baby girl! Still, she is growing which is the main thing.

They increased Jasmine’s feed in a big way which is great and we have swapped from SMA to Cow & Gate, because SMA in the concentrated doses we now need provides too much Vitamin A. So, with this new formula hopefully Jasmine can start ‘putting the beef on’ as my mother would say.

We got home late afternoon and then got a phone call from GOSH, Jasmine’s potassium levels were way too high and it was a bit of a worry. So, they invited to us to go to GOSH on Wednesday morning to repeat the blood test because it seemed so strange that her potassium was so high and her calcium low and generally, the results didn’t tally.

We then had a bit of a bad night as Jasmine’s alarms went off hourly through the night until 4am and then we had a break until 6am when it went off again and then at 7am someone rang us up – wrong number. This morning Jasmine and I were taking turns to vomit, until I felt loads better and used the brief window of opportunity to rush about and get the machine ready for tonight and do all the other things around the house until the sickness set back in.

GOSH rang this afternoon as they had managed to use the extra blood they had taken from Jasmine, as her blood was coming out really well yesterday – as sometimes it is a bit of struggle to get everything they need from her tiny veins – to repeat some of the tests and her potassium came back fine and her calcium was just a tad on the low side which means she is putting it in her bones. I was so relieved. So, we don’t have to go back to GOSH tomorrow. Her other blood results – urea, creatinine, iron, etc., – are looking ok. And with her extra dose of epotein she is quite energetic, which is lovely to watch everyday.

Today she was on her new super high powered Cow & Gate with loads of maxijul and vitapro and she managed beautifully. She is still on the doidy cup as she hasn’t needed the NG tube yet and she managed all of her extra feeds and more – since she was doing a bit of vomiting – and I must replace what she loses. Hopefully, she will get used to the new super feed and her vomiting will calm down as she did about a third more vomiting today than she usually does.

Jasmine spent some of the morning lying on the floor arching her back and some of it trashing her baby gym and then the rest of it sitting next to me on the settee whilst we watched the American Elections getting underway. It was difficult to completely hear as Jasmine was singing very loudly for at least an hour and staring at me whilst she was singing, which was very funny. Later on we went for a walk and Jasmine was singing in her buggy and waved back at one of the guys who works in our building. She is just fabulous and her little gummy smile makes me cry with joy.

Jasmine has been making loads of noise over the past 24 hours. We think it is because she is teething. Her weight, temperature, blood pressure and peritoneal fluid are fine (I know I have checked them twice in the last 24 hours, as usual). So, in between giving her things to chew and rubbing her gums with bonjela there isn’t a lot else we can do. Everytime she puts something in her mouth she pushes it up into her top gum so we are waiting to see if a tooth will appear.

Jasmine started wailing about 6am this morning, so once I disconnected her, Neil got his Tuareg sling out and has been carrying Jasmine about in it. This is very nice as we can see how much she has grown since the last time he used it.

So, I am 10 weeks pregnant. This is a lovely surprise, totally unexpected and now we are over the shock, we are really excited and pleased. Our nurse clinician said that we had done really well to fit that in on top of dialysis, which made us laugh for ages.

Last Friday, I went to the antenatal clinic for a scan to see what was happening. It was a bit of strain as all the memories of Jasmine’s scans and birth came flooding back. I gave up trying to put on a brave face and was a bit weepy through the scan and the bloods and talking about my previous pregnancies to the midwife.

I have morning sickness (or should that be all day sickness) which doesn’t sit well with dialysis. I have to breathe long and hard when I have clean hands ‘cos I really don’t want to wash them again. And when I don’t have things to do, Jasmine and I are spending a lot of time lying on the settee eating marmite rice cakes. Jasmine likes them and they stop me feeling sick.

Jasmine was really funny earlier as she was sitting on top of me and I was a bit tired and was sighing and yawning. She would stare at me for a bit and then yawn and sigh right back at me. Now, she is lying on the floor chewing her sock. I have lost count of the times I have put it back on her foot.

Today is the first time for over a month that Jasmine is struggling with her milk. She keeps refusing it and screaming if I try to press it on her. I think she is teething again and even let me put some bonjela on her gums, so she must be in pain. I guess we are going to have to put the NG down this evening. I am a bit sad, but she has done so well to drink all of her milk everyday for 30 days and eat food on top of that. And as long as she gets what she needs to grow, that is the main thing. She has been sitting round 6kgs (13lbs) for a while now, but I guess that is in part because she had to go on antibiotics again. We have clinic on Monday, so hopefully they will push her food quota right up.

Here is, probably, the last picture of Jasmine without her NG for a while in her winter woolly hat:

A couple of weeks ago we noticed that the sealed wrapping which the dialysate bags come in had changed. Previously, they had been very clear so you could see what the colour of the dialysate bags were like. Suddenly, they had a marbled opaque look to them. We threw a couple of bags away, as we thought that there was something wrong with them. All bags are normally clear and easy to see. We hadn’t been warned that the wrapping was changing so we just assumed that there was something wrong. It looked like there was definitely something wrong with these bags. Finally, when it seemed like the whole batch looked like that, we rang up our unit, then we rang up Baxter who makes the bags, and then the ward, and no one really had an answer. This was a shame as normally Baxter are quite good at informing our nurse clinician if there are any changes at all.

So we got used to the idea of ripping open the wrappings and then inspecting the dialysate bags to check that they were ok. Then, we got another batch of dialysate and the bags seem back to the way they were. So who knows? Baxter certainly, didn’t but then when we ring them, we ring a call centre and the people in there have nothing to do with bagging or anything so of course wouldn’t know.

Anyway, the whole thing got me thinking about how my attention to detail, which was always pretty good thanks to doing a PhD, is now getting out of hand. Because hygiene is paramount when doing dialysis, I am now obsessed with clean hands. When the community nurse came round to add antibiotics to our bags, she brought a student nurse, whom she asked to hold something. He hadn’t washed his hands on arrival, so of course I wouldn’t let him touch anything. I didn’t know where he had been. And now I notice what other people do with their hands all the time. I see people in the street touching their noses and then shaking hands with other people.

And on an evening when I am setting up the machine, I notice exactly what my hands touch, if I have an itchy nose or hair in the way or glasses slipping down my nose, it just all has to wait, until these bags are connected. I notice the exact colour of each bag, the condensation on the wrapping and the blue connectors, how sometimes the drain line steams up a little bit when I connect it to the drain bag, where the lines from the machine touch the cot, and the cabinet we have the machine on. It is neverending. But is it healthy?

I guess it is a good thing because this attention to detail is the thing that prevented Jasmine getting an infection two weeks ago when she kicked Neil’s hand so that he touched the catheter, but I do wonder when Jasmine gets a kidney, will we recover from our OCD?

Last night I connected Jasmine to her machine and watched as the initial fluid drained out of her peritoneum as usual. What was not usual was that the fluid coming out had a little hint of pink. I switched all the lights on for a better look – it was still slightly pink. The fluid should be clear.

At first I thought it was bettadine – the antiseptic stuff which is inside each catheter cap and gets washed away – but after a while, as Jasmine wasn’t draining too well, this pinkness stayed.

We waited until her first drain – as the first rule of anything different is ‘keep an eye on it’, and eventually the line cleared leaving a long red fibrin in there, but her drain bag had a definite hint of pink still. So, I rang the ward. They were lovely and reassuring as always and said that sometimes the catheter inside her peritoneum can rub and cause a bit of bleeding and things should resolve themselves but definitely to keep an eye on it.

Just before going to bed, we checked again, there was still a pinkness in the drain bag but her lines had cleared and there was no sign of fibrin. This morning when we got up we studied the bag, the fluid looked quite clear with just the tiniest bit of blood in one corner of the bag. It is a lot of fluid as Jasmine has 11 fills through the night of 270mls so that produces one bag of three litres, as the lines get primed with fluid before we connect her, in the morning. And after much hunting we found one tiny bit of fibrin even though the one in the catheter looked enormous. We have been told though, that with all the fluid washing back and forth from Jasmine’s peritoneum, fibrins tend to get broken down.

The pink fluid freaked me out a bit, which is typical because everytime we think we have this dialysis thing under control something happens to make us nervous. Thinking about it now, it makes sense, that sometimes there will be a bit of irritation, Jasmine has a large plastic tube where she shouldn’t have and if that rubs against the peritoneum then occasionally it is going to irritate the wall and causing a little bit of bleeding. Still, it had me worried.

Tonight when we plug her in, we will be keeping a close eye on everything, just in case, but this morning her temperature was fine and Jasmine drank all of her milk. She is currently snoozing on the camp bed, after keeping her dad up since 5am. Neil very kindly let me have the camp bed in the living room this morning so I could have some extra sleep. Now he has gone back to bed as he looked worn out, poor thing. And now, I am sitting here all awake whilst everyone else is asleep and the clocks have gone back so it isn’t even 10am. What am I doing out of bed? I am tempted to get some shut eye and then hopefully when I wake up the washing and tidying will have done itself.

I have had my little company since I left lecturing full-time six years ago.

This week I have decided to wrap it up because I just don’t have the time to do it anymore. Jasmine takes all of the energy I have and there is no way I could fit in any consultancy. Normally a job takes at least a week or two and the days can be long. I can’t leave Jasmine with anyone unless they are fully trained dialysis-wise and know what to do in the event of an emergency, which means Neil, and I can’t leave him for a week or two to do all the dialysis chores. It is too much for one person and we are permanently knackered as it is.

And even if someone ever offered to help us out, (GOSH have said they will train anyone at anytime), I don’t think that I would I be able to function properly in the real world. I would be wondering what Jasmine’s blood pressure, weight and temperature was like, and how her fluid was looking and if she drank all her milk, filled her nappy, had all her meds, and the rest of it, all day.

So, now I am a stay-at-home-mum who occasionally does a bit of lecturing (as Westminster have said that I can take Jasmine). I feel a bit sad about the end of my company, but it is one less thing to think about. It is a bit of a relief not to worry about deadlines and company accounts, but I am sad to say goodbye to something I created.

My Uncle Bill died last Sunday, so this week I have been feeling sad and a bit weepy.

On Friday, Neil and I got up really early so that we could get organised and get the train to the funeral. However, Jasmine had other ideas and kicked Neil’s hand as he was disconnecting her. Neil touched the dark blue part of her catheter, which is a big infection risk. We got dressed as quick as we could and squashed onto the rush hour tube with Jasmine in her buggy to get to GOSH.

The infection risk was deemed to be minimal because Neil had clean hands after one of the three minute handwashes. Our nurse took a sample of Jasmine’s peritoneal fluid and gave us two days of dialysate bags containing antibiotics. I put Neil and Jasmine and the boxes of fluid in a black cab home as they could no longer come to the funeral in case Jasmine had to go back into hospital and be put on 48 hours continous dialysis cycling. I then ran up to Euston to get on my train to the north west.

Neil rang me a couple of hours later: We were lucky. Jasmine’s white cell count was 9 and she didn’t need to be hospitalised. I had half-prepared myself to have come back down to London and go straight to GOSH for the weekend. Sometimes those three minute handwashes seem to take forever but Friday showed us why they are so important.

The funeral was lovely. Uncle Bill’s coffin had the Burma Star draped over it as he was a chindit during WWII. And as sad as the occasion was, it was great to see everyone.

Yesterday, I slept all around the place – in bed, the camp bed in the living room, the sofa. I was really grateful not to be in the hospital and Neil thought it was funny that everytime I sat down I fell asleep even though Jasmine was singing and squawking for hours at a time and was only quiet when a) we took her for a walk and b) put her in front of the football.

The antiobiotics have really kicked in and Jasmine is pooing and puking all over the place. Last night I went in to feed her just before our bedtime, this normally takes about 10 minutes. However, with the antiobiotics, she managed to fill her nappy a couple of times and projectile vomit all over herself, me, our bedclothes and the cot. One hour later with fresh sheets and covers and clothes for everyone, we got into bed.

Neil’s hands have given up on him – they are red and cracked and sore. So, I will do all the dialysis instead of us taking turns like we normally do until they heal. He is in charge of Sunday lunch. I have set up the machine ready for this evening and had a bath, so will be able to go to bed at a moment’s notice. Very important, in these sleep-deprived times.

Jasmine is really excited by her one tooth and uses it to bite everything: her catheter, her bib, us. She is off her food but is guzzling her milk and chewing the doidy cup. I will see if I can tempt her with a roast potato when the chef stops playing Grand Theft Auto and serves up my roast quorn dinner!