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.

This entry was posted on Wednesday, July 9th, 2008 at 1:18 pm and is filed under home. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.