Jasmine Stalker-Firth

It seems that people who keep Jasmine in their gardens do google about quite a bit. Last time in my webstats there was How to look after your Jasmine and today there was a ‘Things that will make Jasmine feel better’.

One thing that makes my Jasmine feel better is her weekly epo injection. So this morning, under the watchful eye of our community nurse, Neil injected Jasmine. Afterwards we bathed her, changed her sterile PD dressing, set up the machine, and then went out for lunch with the Grandparents Firth.

Jasmine likes it in Tas as the food is brightly coloured for her to stare at, there are lots of mirrors so that she can look at herself, and the staff are lovely and make a fuss of her. A couple of people eating in the restaurant came over to tell us how beautiful they found Jasmine. And her Grandparents gave her lots of cuddles – all things to make Jasmine feel better.

We are settling into the new routine and getting more sleep. Jasmine is crying less and was feeding well today even though her routine was disrupted. She is also starting to move about a bit. This evening we left her lying on the floor on a blanket with an open nappy underneath her and she moved off the nappy to the other side of the blanket.

The other day when Jasmine was wailing constantly, Neil put her in the recovery position. She really liked it and stopped crying and started singing to herself, my mad gorgeous baby.

We have been giving Jasmine an extra feed around 9pm each evening in order to reduce her overnight feed, so that she wouldn’t vomit in the night. As she has adapted, her overnight feed has been getting less and less, until the other night I didn’t see the point of putting one up. So, I just took her NG tube out too and even if we only get a week or so without it, it will give us time to get a good night’s sleep, and it will give her nose, face, and neck a rest.

I was so tired of listening to my girl puking all night and me getting up four or five times to mop her down, change the towel she was lying on, and pick her up to wind her. Every morning when the stupid food pump beeped to let me know it had finished, I was exhausted.

I was also, really fed up of putting sudocrem on her neck. She had a red angry rash in the gap between her chin and chest where vomit dribbles and stays, and is quite hard to successfully clean at 4am when you are cross-eyed, and sometimes it can lay there for hours if she has a quiet vomit and the sound of her wretching doesn’t wake me up. I was also really fed up of holding her whilst she wretches and brings up loads of mucus.

If living with a NG tube sounds bad, then I can tell you, living without it is worse. The first two days were stressful. I didn’t realise how much we relied on it. We aspirate it to wind her and we put her medicines down it, and if she is struggling to finish a feed we put her in the cot and put the rest of her milk down her tube and we don’t have to force feed her. It takes the pressure off feed times in a big way. So I was frightened about taking it out but if I didn’t do it, I would be forever curious.

The first day without it was difficult. She had loads of extra wind and was screaming for a good hour or so, and we didn’t know and couldn’t tell if she was hungry, had wind, or whether it was just the change in her routine. By the end of the day I was wondering whether it really was a good idea.

Yesterday, was the same and she was running a temperature too. We rang the hospital and were told to bring in a specimen of Jasmine’s peritoneal fluid. If Jasmine has a temperature and it doesn’t come down and if she is in pain, it can be a sign of peritonitis, which is a worry. If the catheter gets infected it would have to be removed. As it was the middle of the day we took a specimen straight from Jasmine’s peritonium. This is the drill:

1. Close all doors and windows.
3. Wash hands for one minute.
4. Sterilise area and get equipment ready.
5. Wash hands for one minute.
6. Open equipment without touching anything and then wrap Jasmine’s catheter in an alcowipe to protect it from the environment.
7. Wash hands for three minutes.
8. Take cap off catheter, attach specimen bag, unscrew catheter clamp, watch fluid drain until there is enough for a sample. Twist catheter clamp shut and clamp specimen bag.
9. Wash hands for one minute.
10. Open catheter and specimen bag caps equipment without touching anything and then wrap Jasmine’s catheter in an alcowipe to protect it from the environment.
11. Wash hands for three minutes.
12. Detach specimen bag, put cap on catheter, then put cap on specimen bag.
13. Leg it to the hospital.

It was 3pm by the time we dropped it off and went for lunch. Jasmine fed beautifully in the restaurant, without even a posit (thanks Leo for looking up the correct terminology) for the first time in about a week, even though we were ready. Everytime we feed her we have: a towel and babywipes to hand, and spare bibs, a change of clothes, flannels and a spare towel in her bag.

We sat there for a long time. When we got home the hospital rang to tell us that her fluid was ok and her white cell count was fine. We breathed a sigh of relief as otherwise we would have had to go back down to hospital for 48 hours continous dialysis and antibiotics. And then we got on with the rest of the day’s stuff. We wiped down the table and got ready to change Jasmine’s PD dressing – three minute handwashes, sterilising her exit site, etc., I will write the drill out another day. Then Neil did her obs (weight, blood pressure, and temperature – still high) and then he fed her whilst I set up her machine.

After I connected her, Neil drew up the medicines and I got her milk ready, then we had dinner and then it was 10pm. So, I went in to feed her. She was awake and ready for a feed, which she took, and some more, and wasn’t windy and only had a small vomit. And so by the end of the second NG-free 24 hours she had kept down 495mls of the 500mls of her feed. We were really pleased. Her feed is super-duper-concentrated SMA, I don’t think a bodybuilder drinks anything more potent, but she seems to like it.

Today so far, she has fed much better, her 6am feed went really well and I slept through it. Neil gave her it, and she made very little fuss. On top of this we have now had two good nights of quality sleep. We are working on the quantity. Her appetite has picked up, and she is feeding more quickly, and now cries for her 9am feed at 8am, and her 12noon at 11am, and so on, so hopefully we will get her on an even keel and be able to get more calories down her. She hasn’t put on any weight for three weeks now, so we need to fatten her up. Hopefully the NG-holiday will help, as a big piece of plastic at the back of your throat is not generally known as an appetite stimulant.

We are having a quiet day. Jasmine is currently in her buggy, licking her links and staring at the rain on the windows. The skin on her face where the tube was is healing nicely.

Yesterday morning, under the supervision of the community nurse, Neil gave Jasmine her weekly epo injection. Erythropoietin is a protein that is made in the body by the kidney. It causes the bone marrow to produce oxygen-carrying red blood cells. But as Jasmine’s kidneys don’t do this, she needs the synthetic epotein which does the same job in preventing anaemia.

Typing this now, I wish I had taken a picture of this milestone. He had his latex gloves on, Jasmine in his arms, all good to go. We were so focused on what we were doing, that we never thought about it. Next time when things are a bit more familiar, we will do a reconstruction of Neil injecting Jasmine. And after a few more injections under supervision, we will just do it ourselves and not have to wait in for the nurse anymore and can spend the time in the sunshine.

Neil said that it was fine. We have both practised so much injecting the little rubber ball and Jasmine has quite nice chubby thighs now, so it was nice to be doing the real thing. Jasmine was fine about it. She was crying before the injection because she gets upset about being restrained, rather like when we hold her head straight whilst I repass the NG tube. She doesn’t get upset at the actual action: NG tube or injection. Understandably, it is not being able to wave her legs or head about that is upsetting.

Neil’s only problem is that the latex gloves made it hard to inject the epo as they made him lose his sense of touch. We are going to ask GOSH about whether gloves are necessary. At the hospital (and in the community) nurses wear them to reduce the risk of cross infection between patients. So they use purple gloves for various activities like feeding and nappy changing. And then they use sterile latex gloves for injections and connecting patients onto dialysis. We don’t, we wash our hands for three minutes, as we only have one patient. Yesterday, Neil washed his for one minute and then put on the gloves.

Perhaps doing our usual thing will be better, for us, and we can do a little bit for the environment. With all the equipment we use and can’t recycle because of health/infection risks, we are not doing a great deal for the environment at the moment. The plus side (if there is one), we can’t go on holiday, we don’t own a car and we live in a very small flat, so perhaps we counteract all the bad stuff we do. Jasmine’s deliveries arrived yesterday and we seem to have an awful lot of boxes piled up in the corner of our bedroom. Neil has to climb over me to get into bed. Any excuse.

Jasmine’s singing is just fantastic. She was thrashing a bit in her cot at 4am, she does this when she is uncomfortable, so I picked her up to wind her, which she did herself instantly and fabulously, and then when I lay her back down, she started to sing again, 4am is early, even for her.

I am sure Jasmine recognises tunes. Everytime I sing Corinne Bailey Rae ‘Put your records on’ , she smiles as if she is thinking: “Ah yes I like this song.” She also likes Ray Charles, Pavarotti, and Barry White, especially when the last two duet together. There are so many songs to show her on YouTube. We had a viewing session together last Saturday and she was mesmorised. And then we watched Wimbledon. How cool was our Saturday?

Today we are going out to lunch and then watching the William’s sisters Final when we get back, as that should be a good bit of tennis, and a pleasant way to spend the day.

At GOSH they do a great range of really cute plasters. The other day when Jasmine had her bloods done the nurse put this cool plaster over her arm. It says ‘excellent’ on it and has a fish on it. Last time she had a mouse with ‘well done’. At each clinic now I run about asking all the kids what’s on their plasters.

So Jasmine’s blood pressure seems to be coming down. It is a slow process, but I guess that is the best way to do it, without stripping all the fluid and making her dehydrated. Tomorrow we will get our latest dialysis delivery and Jasmine will be getting new dialysate bags which have more calcium in them, as she is still not getting enough calcium and is taking what calcium she has from her bones. At the GOSH clinic they keep an eye on this by measuring her parathyroid hormone (PTH) levels in her blood.

If Jasmine’s PTH reading is too high, it means that she is taking calcium from her bones instead of using the calcium (serum) in her blood and other calcium ions. Normally, her kidneys, regulated by her PTH, would reabsorb calcium as they filter the blood and take vitamin D from her feed and convert it to an active form of vitamin D, which helps absorb calcium. But because her kidneys don’t work, Jasmine gets an active form of vitamin D in medicine form every morning called 1 alpha calcidol which does the job for her.

She also gets calcium acetate with every feed so that it binds with the phosphates in her milk and gets rid of them in her urine. Normally, her PTH would help her kidneys to regulate phosphate reabsorption but since they don’t, the calcium acetate does it for her. It is a balancing act though, giving her too much calcium can lead to other complications, so that is why her PTH and calcium levels (serum and ions) are measured at clinics.

It is amazing how much work the kidneys do, regulated by hormones, and even more amazing how many ways our medical team replace all the things Jasmine’s kidneys don’t do, so that she can grow well. We are in awe of, and very grateful for, their great skill and dedication.

We had a very relaxing time this weekend with plenty of time for reading and cooking, which was just what the doctor ordered, inbetween our concern about Jasmine’s blood pressure.

Neil did a stella job yesterday of changing Jasmine’s sterile dressing which covers her PD catheter exit site in her abdomen. It looked absolutely fantastic and very neat.

This morning we got up early to walk down to the GOSH Outpatients Clinic via St Pancras for a nice breakfast, after a hectic night: Jasmine vomited at 3am, 5am, 5.30am and 7am.

It was a busy morning in clinics. Jasmine was weighed (4.82kgs) and measured (59cms) and her blood pressure taken (82). They are still concerned about the extra fluid she has on board, so the dietician has reduced her milk intake to 500mls and concentrated the recipe. Hopefully, this will help her overnight vomiting as she had been doing so well. Unfortunately, since our last clinic she has vomited more than usual and hasn’t put on any weight. It is a balancing act of giving her enough nourishment to grow and enough dialysis to clean her blood and take off the excess fluid without making her sick. The renal team at clinic have to constantly tweak things to keep up with her development and to encourage her to grow.

Part way through our appointment we went to the Cardiac Department inside GOSH where Jasmine had her heart examined. It was very busy because they had a shortage of technicians, so we had a bit of a wait.

Some mothers may say that they know their children inside out. With Jasmine, I have taken it to a new level. Today, I saw inside her heart and watched the blood flow through the chambers when she had her echocardiogram. When she was a GOSH in-patient I looked at cross-sections of her brain and watched the blood flow through the large veins in her head when she had an ultrasound on her skull. At home, I regularly inspect the contents of her stomach via her NG tube. I know my daughter, scarily well.

During the echocardiogram, the technician said that Jasmine’s heart looked fine, but we will find out the extended results tomorrow or the day after.

After our visit to the Cardiac Department we went back round to the clinic and Jasmine’s had her bloods done and then we popped up to the ward to say hello and return a blood pressure cuff that we had borrowed whilst we were all investigating cuffs and different readings and ambulatory cuffs the other week. They were very busy today and had five babies in there. One of the nurses said that it felt more like a creche. The nurses on night duty have been very busy with five babies crying altogether.

We finally left the hospital and went for a late lunch and then got the bus home. It is hot today so Jasmine is lying in her cot having a well deserved snooze.

Jasmine had a big poo at midnight. We had given her enough laxatives to make a horse go and we had been massaging her tummy and making little bicycle movements with her legs in order to get her going. We were really worried and had a plan in place with our clinical nurse specialist to take her to hospital if something didn’t happen by this afternoon. People on peritoneal dialysis just can’t get constipated – it is too dangerous.

So, when we heard the rumblings and checked her nappy, we trampolined up and down on our bed and danced around her cot. Jasmine went back to sleep as she didn’t know what all the fuss was about. After that she vomited a little bit through the night: 1am, 3am, 5am, 6.30am and then her food pump beeped at 7.30am to finish. But I just didn’t care that we were up half the night and don’t now, even typing this cross-eyed. Jasmine has had a poo. Hallelujah.

It reminds me of the time at GOSH when she had terrible bowel problems after her catheter insertion operation. She was vomiting bile for the whole weekend and the surgeons were concerned that there was a kink in her bowel and the catheter would have to be removed. On the morning of her first poo, the lovely nurse told us that she had been running up and down shouting, ‘Jasmine has had a poo.’ And then when the consultant came in and asked how we were, I said: ‘Jasmine has had a poo.’ And he was very nice and said that he had heard. And I felt like such a plonker later on when I thought about it and Neil kept teasing me.

This morning around 8am I was lying in bed trying to sleep but couldn’t as Jasmine was singing in her cot again. So, I got to thinking how I love weekends as we don’t have to phone anyone about fixing things in the flat. Two minutes later there was a knock at the door and it was a man who had come to look at our light fitting in the bathroom. Fantastic. I love him! He has ordered a new part and Neil has taped it up as it is dangling over the shower and we need to get a wash.

When Jasmine was singing I sang back to her ‘Hello, hello, hello’ and I swear her next sing-song was a ‘hello’. ‘Did you hear that?’ I asked Neil. He did.

Neil is in bed today with a man-cold so Jasmine and I are nursing him back to health. However, she threw up most of her morning feed, so she wasn’t feeling none too clever either. They are both snoozing nicely in bed as I sit in the corner typing. Good job our bed is kingsize. I have told Neil he has to stay put and can’t take more things back to Argos today. I might even go back to bed myself. At least we don’t have to do much today – just put her on her machine tonight.

One other good thing that has happened is that Jasmine’s blood pressure seemed lower this morning (92). It could be a blip but I am hoping that it is a sign that we are taking off more of her fluid. I will check it again later. She had an extra strong dialysate bag on her machine Monday, Wednesday and Thursday this week to help strip the fluid. Last night we gave her a break. Strong bags are not so good for her peritoneum in the long term and they make her vomit more. However, she vomited most of last night so it wouldn’t have mattered. Today and tomorrow she will have strong bags. The plan is to get her into the best shape for her scan so they can get a good look at the heart and also just bring down this blood pressure. High blood pressure in a baby isn’t good. High blood pressure in anyone isn’t good. We have to look after our hearts. Mine is called Jasmine.

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.

Jasmine is getting more active everyday. Yesterday she tried to roll over to one side when I was changing her nappy. She can also reach out for things and pick them up. And when you wave at her she waves back at you. Her Granddad Firth will be thrilled as he has been waving at her for weeks. His hard work has paid off.

Today she is lying on the floor listening to ‘La Traviata’ and is gurgling along and waving her legs about. We have decided that she needs more floor lying time so that she can learn to roll over and all the rest of it. We are holding her back as we hold her far too often (all the time) because a) we love her to hold her, and b) to stop her vomiting.

Her vomiting has calmed down a bit now we have left her feed at one spoonful of maxijul. She was only sick at 1.30am this morning and then at 6.30am. And then after her 9am feed.

Yesterday it was a similar story during the night and in the morning and then she wasn’t sick for the rest of the day – just a couple of posits/possets (?? little spoonfuls of sick). I have no idea how to spell this, it was what the nurses said on the ward. I googled for the right spelling and read that Samuel Pepys used to drink posset: a mixture of wine and hot milk and spices which would curdle before you drank it. So posset it is then because that is exactly how Jasmine’s possets look, especially after her morning medicines.

Jasmine has been vomiting more than usual since the dietician changed her feed. She was fine with one extra tablespoon of maxijul, but two spoonfuls have pushed her over the edge. She was vomiting through the night, last night and the night before, so we haven’t slept properly for two nights. And then tonight just before I sat down to write this I checked in on her and she was lying in a pool of vomit. It was all in her hair and round her neck. Poor thing. We have changed her feed back to what it was and just increased the volume and hopefully that will do the trick and we can all get a good night’s sleep.

We had our dialysis deliveries today and the guy turned up an hour after the slot we were allocated: 9am-12.45pm. This was rubbish, which is a shame as normally they are fantastic. This man had no end of trouble getting into the building (his small van was far too big to into the car park so he had to park outside) and getting lost (and was driving about our street asking people for directions!?!) and getting stuck with his trolley in the lift and making the lift jam until it made lots of alarming noise. He was just not having a good day. I was so tired at that point I thought it was funny, which probably didn’t help matters, and he nearly had a fit when I said that I hoped we didn’t get stuck in the lift after what he had done to it.

Lucky for us, we didn’t wait in *just* for him all morning. Oh no! We had other things to look forward to. We had our Fresenius deliveries which turned up on time this time and altogether. Last month they were dreadful, especially when I rang up to ask where my deliveries were before 9am (as their driver had mistakenly rung me up at 7am to collect supplies and not deliver anything) and the woman who answered said that she was a nurse and asked me to get off the line as she was waiting for dying people to ring her up and wasn’t interested in my problems.

We also had the community nurse come round this morning. We practised our subcutaneous injection techniques again by injecting a rubber ball with saline solution. It was good, except I had to wear very small latex gloves which cut off my circulation. She has left us a DVD to watch so that we know what to do in case Jasmine ever goes into anaphylatic shock after an injection. We will be getting out the popcorn to watch that one.

This evening I was so tired after the day’s excitement that it took me ages to set up the machine. I went into a trance during one of the three minute hand washes as I was so tired and washed my hands for about five minutes which would have been fine had I not touched the wall when I was drying my hands and had to wash them all over again. Once I had done another long handwash and got to the machine I realised that I hadn’t set the machine to self-test after I had connected one of the bags. I am not sure if this would have caused any problems from a sterile/safety point of view, but I wasn’t going to take any chances. I scrapped what was on the machine and started all over again. To do this I went off to wash my already clean hands and then realised I hadn’t got my equipment out and had to rewash my hands all over again once I had gotten my equipment ready, before I got the machine self-testing for yet another three minute handwash. My hands were very clean.

Tonight, after Jasmine vomited everywhere, she was beeping away as she wasn’t draining well, so I tipped her this way and that to get her to drain properly until she started to cry and the beeping stopped. Then just after she got back to sleep, Neil couldn’t get anything out of her stomach when he aspirated her tube (after all that vomiting) so he had to wake her up again to feed her some milk so that he could test the tube and get some milk back, before setting up the overnight feed. She was understandably upset about that too. Imagine spending the best part of the day vomiting because someone has fiddled with your feed and getting into bed for some shut-eye and then people come in fiddling with you and tipping you up and down and pulling the contents out of your stomach and waking you up to force feed you. Not happy!

Most of the time I try not to think too much about it all (especially when I am torturing Jasmine) and just get on with the task in hand, and luckily there are lots of tasks to get through so I don’t have to think at all. But on days like today when things don’t work properly and I haven’t slept properly, I get a bit teary and a bit frightened and a bit fed up. At times like these, I phone my dad who says: ‘Never mind, eh.’ He says this because he is a very wise man and knows that there is nothing in the world that anyone can say to me that will make it better. ‘Never mind, eh’ is the only thing to say. It gives me the strength to keep going, to go to bed, to get some sleep, and get up tomorrow and start all over again.

The days are just flying by. On Monday we went to GOSH and Jasmine had her usual checks and bloods done. They are quite pleased with her progress and said that she was looking much better too. However, her blood pressure (BP) is still a cause for concern so we borrowed an ambulatory cuff and Jasmine wore it for 24 hours and it took her BP every half hour during the day and every hour during the night. We got a phone call today to say that there is nothing to worry about and we will find out in more detail what her BP is like next week. It varies a lot though. Tonight it was good (88) as she was snoozy, but it fluctuates. We are continuing the same amount of medicines but increasing the dialysis fill.

After the clinic on Monday we popped up to the ward to say hello to the nurses, before we went out for lunch and then to the British Museum for a mosey round. That evening Trish took me out for dinner. We went to Sarastro on Drury Lane to listen to the live music and opera singers. It was very nice, but it felt a little strange not being with my Jasmine. That evening was the longest I had been without her since she came home from hospital. I missed her even before I said goodbye.

When I got home that evening poor Neil was worn out, because if we get behind in our routine of all the feeds and getting Jasmine into bed then she gets rather tired and crotchety and all the tasks of setting up the machine, sterile handwashes and putting her on dialysis, then sorting out medicines and overnight feeds, can take much longer. It is hard to concentrate with a wailing baby especially when you have sterile hands and can’t pick her up.

On Tuesday Jasmine’s nose had been bleeding from, we think, the NG tube irritating her nostril. I pulled it out and got a fresh one and popped it down the other nostril. Yesterday she spent most of the day tugging on it until she pulled it out whilst we were doing her PD dressing change. So, we carried on with washing the exit site and then Neil held her whilst I repassed the tube.

I seem to attract lots of advice as I wander about minding my own business. On Wednesday, a homeopath, whom I happened to sit next to when I was having a coffee and letting Jasmine stare out of the window, asked lots of questions about Jasmine and I thought I would try out talking about her and wished I hadn’t in the end. The woman decided that homeopathy could support Jasmine’s kidneys and help them function better. I mentioned that I am losing my hair and she said that that it could be a sign that I have kidney trouble. I begged to differ and diagnosed ‘having a baby’ as a the cause of my hair loss. She agreed and showed me her bald patches where her hair fell out after giving birth and is just growing back after two years. Not a great advert for homeopathy.

Two other old ladies stopped me this week. One in Boots, to ask me if I am breastfeeding, tell me that I should be, and how she fed both her children for six months. The second stopped me to tell me not to give my child drugs and that I should be careful. Careful about stopping and giving any mad old bat the time of day in the street. This goes for homeopaths too.