Jasmine Stalker-Firth

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.