Jasmine Stalker-Firth

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!

It has been all go this week. Monday, we went to GOSH for our appointment which was cancelled last week due to the fire. Jasmine screamed through her bloods, but we all think that it is a good sign that she objects to having unnatural things done to her rather than sitting there looking resigned. They changed her dialysis program too, reducing it by half an hour to 13 hours every night. Saving half an hour everyday really does make a difference. We never thought it would, but on those days when we are running late through all the dialysis procedures and it seems never ending and we haven’t got her connected at her usual time, knowing that it will finish half an hour earlier in the morning really helps.

Now that Jasmine is bigger, 13 hours is a long time for her to be connected to a machine and to lie in her cot. We fish her out to feed her and put her on our bed, but we have to be careful, because of the lines, particularly since that time her patient line broke and we had to go into hospital for the weekend.

She doesn’t need 13 hours sleep anymore, so will often wake up at midnight for a sing-song, which can last some time before she goes back to sleep before waking up at 5am. By which time, she has been on dialysis for 10 hours and starts to vomit, so we have to wipe her down and give her glucose water to drink. Then, she is ready for the day and will sing and burble and be cute for about three hours, or on a bad day, will vomit and vomit and scream. Consequently, we don’t get a lot of sleep. This week we have been taking it in turns to get up at 5am and go off into the living room and sleep on the camp bed. Three hours of uninterrupted sleep: Priceless.

After our Monday appointment we went for lunch in TiffinBites in the City and Jasmine threw up all over the floor. The staff were lovely about it and got the mop out. I love it in there. They are so nice. TiffinBites is where we took Jasmine when we went outside of the hospital for the first time during the day, so it is somewhere I associate with great joy. One lovely waitress thinks Jasmine is so cute, she has offered to babysit a couple of times.

Later, we went past the Bank of England and watched the millions of journalists swarming about outside, reporting the end of the financial world as we know it.

Tuesday, Jasmine had her third Hep B injection at the doctors. She screamed and then got over it which the doctor found remarkable. Tuesday evening, I discovered that after leaving Neil in charge for a couple of days we had run out of medicines and maxijul. I beat him round the head and he had to go down to GOSH on Wednesday to get some supplies until our prescriptions came through at the doctors.

Thursday, we took a family trip to the doctors and all got flu jabs. Neil had a serious man-flu jab that was very painful. Mine didn’t hurt at all, probably due to the extra padding I acquired from stuffing my face, constantly, the three months Jasmine was in hospital, and Jasmine cried at being restrained whilst the doctor jabbed her in the leg. No doubt she was upset to learn that she has to go back next month and have a booster. Getting a flu jab when you are so small means you have to have it twice.

In the afternoon Jasmine and I were sitting on the settee having a little cuddle, when she took my index finger and put it her mouth. She has her first tooth! A whole tooth is poking through on the left-side at the front of her bottom gum. It looked tender so I rubbed some bonjela on it, but Jasmine was totally unimpressed and kept gagging in a dramatic fashion. The other thing that she has been doing a lot of this week is sitting up by herself. She sits there for a while unaided and then looks surprised, wobbles and falls over.

Friday was delivery day, when I normally have a complete melt-down and get really upset, but it passed by quickly and without any drama. The Fresenius giving sets turned up at 7.55am and then the Baxter dialysis man turned up at 10.20am with all of our dialysate boxes and swabs and alco-wipes and everything. I hadn’t even noticed it was delivery day and it was all over by 11am.

In the afternoon we gave Jasmine her third injection of the week: her epotein (to prevent anaemia). This was increased this week, as she had been looking slightly anaemic. She wriggled and cried but got over that quite quickly too, but her thighs look like pin cushions. Then we changed her PD dressing on her stomach and set up her machine and did the obs and all of that. So Friday was a busy day, but it went well.

Today, Jasmine is 8 months old. She turned her nose up at her porridge this morning, and didn’t fancy anything else, probably because of the new tooth and the drooling, but she is enjoying her milk. She has had the NG tube out now for 10 days and we will encourage her to drink out of her doidy cup for as long as she can. We are enjoying the break from the food pump, giving sets, syringes, etc., but will push that plastic thing back down her nose and into her belly anytime she needs it.

This morning, Jasmine was drinking beautifully -we are trying to teach her not to guzzle – and she only had a couple of posits, no vomits at all (normally she has 10 or more big vomits a day), until I gave her sytron (her iron supplement) and she threw up everywhere and wasn’t very pleased with me.

At the moment, she is sitting on her dad’s lap playing Grand Theft Auto (Neil has just blown himself up with his own hand grenade), waiting for the footy to start. Fans have been banned from wearing the mankini. Shame, I was looking forward to seeing them in all their glory.

We took Jasmine to the park today and put her on a swing. It was funny as it took ages to coax a smile out of her. She was completely unfazed by the fact that she was swinging through the air, and sat there looking really underwhelmed wondering, why we were so excited. After a while when she had leant over to her left and found a comfy position, she relaxed and began to smile.

Her vomiting has been really good – a lot less than usual – and under control for about a week, and then two days ago, she had a big vomit and threw up her NG tube. I left it out, initially for an hour or so, but she managed some porridge and then some milk (out of the doidy cup) and then at lunchtime some spinach, parsnip and basil puree and then more milk. Two days later, she is drinking away without her NG. We will leave it out again until she needs it and for now, we will give her nose a rest, and us! Preparing and carrying about giving sets of milk, 20mls syringes for aspirating, flushes for cleaning her tube, the back pack and food pump is a big commitment.

The only thing that is slightly stressful without the tube, is giving her 4mls of sytron (sodium feredate – iron) everyday. We have tried mixing it with milk or with water, but she won’t drink it, or if she is caught out will vomit violently everywhere. We have tried mixing it in food, again a big no-no. We have tried just putting it in her mouth, but she spits it out. So, now we give her a sip of glucose water and then chase it up with a quick squirt of sytron and the another sip of water and another squirt of sytron and so on until she finishes it or gets fed up, and then we give her a rest and do some more later on. It seems to work.

It is well known on the ward that sytron causes all the babies to vomit, I don’t know why, it is cherry flavoured and tastes really nice.

We got up on Monday morning to go down to GOSH for our outpatient appointment and when we got there the street was cordoned off, with hundreds of people (mainly journalists and cameramen) standing about. We stood about too, as when something out of the ordinary happens, it takes a while to figure out what to do next.

Eventually, a journalist looked at Jasmine, who was looking really cute, and then at us and began to approach us (obviously thinking we would make a good human interest story) so we took to our heels and ran away. We went for a coffee and then after a while of sitting there decided it would be good to ring the hospital.

They had been trying to ring us (but in the excitment we hadn’t switched our phones on) to tell us to go home and come back next week as they had been warned that the street could be cordoned off for the whole day.

The coffee shop had lots of people coming and going, and ringing back and forth to get updates. Jasmine, as per usual, wondered what all the fuss was about. Eventually, news filtered through that there had been a fire in the cardiac wing. Four firefighters were injured fighting the blaze but no patients or staff were.

Jasmine has had a brilliant feeding day today. She only vomited 4% of her total feed. I am thrilled and am writing it here so that on those days when I feel like she never stops puking and we all smell of sick, I will be able to look back and say, “Ah that was a good day.”

And it was. Jasmine is still recovering from her cold and Neil and I are trying to not succumb to one. Jasmine and I lay on the bed and listened to Radio 4 and had lots of snoozes and we only got up to get more tea, milk, and various snacks. By mid-afternoon we had run out of teabags and milk (not Jasmine’s – but it tastes a bit funky in tea) and the rain had stopped, so we went for a stroll to stock up.

When we came back we lay about some more. This time in front of Fantastic Voyage – one of my all time favourite sci-fi movies, which was serendipitiously on Channel 4. Then Neil came home and said, “What is this rubbish you are watching? Why is he getting eaten by a marshmallow?”

Yesterday, we went to RIBA for breakfast and a look round the Sterling Prize Exhibition. I think the Dutch train station should win. Neil thinks the Cambridge flats should. Jasmine, as you can see from the photo, is still thinking about it.

This morning, after Neil had fed Jasmine via her NG and the food pump, he had her lying on her front on his lap while he played Grand Theft Auto. She was wailing away so he said to her, “I’ll pick you up but don’t blame me when you puke.” He put her vertical and hadn’t even managed to turn her to put her on his shoulder when she vomited. We are getting to know her ways quite well.

Neil got us a PlayStation and we have been playing Grand Theft Auto quite a bit. Jasmine likes it too and when you sit her on your knee, she tries to touch the controller and join in the game. Whenever I steal a car and try to drive away I always crash into the police and end up getting shot. Jasmine pushing random buttons might improve my performance.

In total Jasmine drank from her doidy cup quite happily everyday for two whole weeks. Her vomiting started to calm down and we were getting her back onto solids – porridge, carrots, mashed potato and the like, when she caught a cold and was coughing up phlegm and lost her appetite. So, we had to put the NG down. Poor thing! She has been wearing it now, for about four days. The other day, the snot running down her nose was so bad that when she coughed, her NG slipped out. Yuk! I think she might have had a sore throat too – poor thing, as she would grimace when she swallowed. Imagine having a sore throat and a great big piece of plastic stuck in the back of your throat.

We went up to see my parents again and it was miles easier this time. We knew exactly what to take, we hired the same car and so we knew everything would fit, and it was easy to get ready to go. We took less stuff because we were more confident about doing dialysis elsewhere. And we had a lovely time. It was a relaxing break and now we are back in our own place, it seems that autumn is in full swing, all the leaves are changing and there is that coolness in the mornings. The other night when I put Jasmine on dialysis I noticed that it was dusk. I love autumn – my favourite season.

Yesterday, Jasmine seemed much better and when her NG came out we left it out for a few hours whilst we went for lunch with her Grandparents and then to the National Portrait Gallery. We carried her in our arms so that she could see the portraits and she squealed with delight as we wandered around. She managed two full feeds from her cup and only started to struggle around bedtime. In total she only lost about 10% of her feed in vomit yesterday – previously it was about 20% or more. We were so impressed. We put the tube back down just before we put her into bed as she didn’t want to drink anything else. But she was unhappy about the tube and cried herself to sleep.

So we are waiting for her appetite to pick up a bit more and then we will restart her porridge on a morning. It is all about patience in this feeding game – a bit like Grand Theft Auto.

The other big news is that Neil has fixed 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 has been kidnapped by aliens or is currently trapped under a heavy piece of furniture, otherwise we can’t account for the fact he isn’t returning our calls.

It has been a very tiring two weeks since we came out of hospital. What with running about constantly picking up antibiotics and the community nurses coming in (or not as the case may be), I was very glad when Jasmine’s course of antibiotics came to an end. She was vomiting loads more than usual and also had a big rash all over her back and legs – we think due to the antibiotics. So this week is all about settling back into a routine. Saying that though, this morning she had her Hep B part two injection and will no doubt be vomiting and thrashing about later on, as it didn’t agree with her last time.

On Monday, we went to GOSH and I was a bit worried on Sunday as Jasmine hadn’t gained any weight at all for three weeks. Admittedly she was on antibiotics for two of them, but whenever Jasmine doesn’t gain weight I feel like I have let the team down. I know this is silly as everyone at GOSH always tells us that we are doing tricky stuff and give us lots of positive pep talks. Anyway, Jasmine may not have put on weight – she is still 5.5kgs (12lbs) – but she has grown and is 62cms long. And she is filling out. Some of her clothes are too short and she is bursting out of some of her babygros.

After clinics we went to the champagne bar at St Pancras. Neil and I have been trying to celebrate our wedding anniversary for days. Each time we tried to do so, something would happen like one of the dialysate bags would split or we would run out of antibiotics and have to sprint off to the hospital. Sometimes it seemed to happen literally as one of us stood there ready to open a bottle of something nice to have a little party. We managed a little celebration on Monday, finally!

It was funny in the bar. We were sipping away on our bubbly (Pol Roger) and had propped Jasmine up so that she could see the Eurostar trains and people would wander by and say things like, “Oh never too early to start on the good stuff,” etc. We had a lovely afternoon and I went to sleep for a couple of hours when we got home so that I was fit and raring to go on dialysis duty after our celebrations. We have been married six years now so it is getting pretty serious.

Yesterday, we took it easy and enjoyed relaxing at home. Jasmine was still super pukey but she is still drinking out of the doidy cup and has had her NG out for a week now. At clinic Jasmine gave the doctor a drinking demo. She was very impressed and said that it is rare for a renal baby to have an appetite as they behave like anorexics (not anorexic nervosa : people starving themselves, but the medical anorexia: reduced appetite because of a medical condition such as ESRF). So, it is good that Jasmine appears to have some appetite.

This week we are giving her extra sweetened water (three spoons of maxijul in boiled water = 25 kcals) whenever she is thirsty, especially when she is on dialysis as that is the time she is the most vomity, and lots of milk. She is back on porridge too. We are building up to other solids again, after she lost her appetite on antibiotics.

We have been feeding her more slowly, which is quite difficult with the doidy cup as she gulps the milk and wrestles with you and won’t let go of it and reaches out for the cup when it is in sight. We lie her on her front straight after a feed for about 15 minutes and that really helps. It allows her to digest her food and somehow stops vomiting – it is magic. She is happy in this position. Earlier when I picked her up to put her back on my shoulder she started to cry. I had to put her back down on her front – well whatever works.