Archive for April, 2008

Wot no blog

Wednesday, April 30th, 2008

Yoda

I stayed over at the hospital last night with Jasmine as part of the dialysis training. Neil kept us company until late so by the time he got home he was so tired he got straight into bed. I enjoyed our a girlie sleepover. Neil got us pizza whilst we watched the footie and Jasmine, who was completely flaked out in her cot.

After Neil left I managed to fall asleep but it was a busy night. I seemed to hear alarms quite a bit and nurses rushing up and down dealing with them. At one point they were switching lights on and off to find the source of one random alarm that didn’t seem to belong to a patient, so inbetween sleeping and wandering about, I spent quite a bit of time watching Jasmine sleep and looking out of the window at the ambulances coming and going.

I finally got into a deep sleep around 2am after changing Jasmine who had vomited a couple of times. Then just after 3am the alarm on Jasmine’s machine woke me up. The nurse on duty had made Jasmine’s machine alarm on purpose so that I could get some practice dealing with alarms when half-asleep. I don’t know how she managed to sneak in without waking me when the door to our cubicle is really heavy and squeaks a lot. I gave Jasmine a shake to untangle her line and unclamped a line on the machine. Luckily this seemed to do the trick and I was able to go back to sleep. It was good practice and I feel much more confident when dealing with the machine.

This morning Neil arrived with lattes and croissants which perked me up no end. Neil disconnected her and then I went off to Westminster to give a lecture. I was wondering how I would manage, but it went ok and I enjoyed it.

I got back this afternoon and did Jasmine’s machine and we went for a cup of tea downstairs and watched the world go by. She sits wide-eyed like Yoda making wise grunting sounds. I can now chat to myself to my heart’s content as Jasmine sits on my lap. People think I am chatting to her – little do they know that she isn’t really listening.

A long day

Monday, April 28th, 2008

We moved from one side of the ward to the other today. It is used by patients and parents to be semi-independent and to get used to doing everything before they go home, but still have access to the nurses when they have a question. It is really quiet on this side and I miss chatting to all the nurses and having them pop their heads round the door to ask me if I need anything.

Today I took a sample from Jasmine’s catheter – direct from her tummy. I also set up her machine and connected her without anyone supervising us at all. Although I have done her machine many times I was convinced I had done it all wrong because no one was watching, but it worked fine when I plugged Jasmine into it. Neil and I did her PD dressing together this evening when he came in from work as it is a two man job. Everything else we can do separately and take turns, so that we get a break.

I took Jasmine out for lunch today and someone asked me if Jasmine was my baby. How weird. Whose baby would she be? Still it was better than the other four people who asked me why she has a tube up her nose. My new answer: because she needs it.

Jasmine at home

Sunday, April 27th, 2008

Jasmine and her dad

We got up early this morning and headed down the ward. Jasmine looked quite small this morning as they have been putting her on stronger dialysate in order to get rid of the excess fluid she is retaining. The registrar thinks that she is still retaining some fluid and was squeezing her thighs to test her fluid retention. I disconnected her from her machine, Neil made up her medicines and then we fed her and went out for breakfast.

After breakfast we headed back to the ward so that Neil could set up her machine for this evening.  Then we came home and are lying about here, which is very nice. Jasmine is now getting into the habit of crying really loudly if there is something not exactly to her liking. We find it really funny, but shouldn’t as she is terribly spoilt, but so gorgeous we can’t help ourselves and give in.

Neil: Jasmine goes to the park

Saturday, April 26th, 2008

Jasmine in the park

Today we took things a bit easy. I made up her medicines for the day, which took a while, as she is on quite a few! Ruth did Jasmine’s PD dressing, we changed it unsupervised. Ruth had it all under control, so that is one thing that we have sorted. We took Jasmine’s 3 pm milk, and went to the park. Coram’s field only allows adults in if they are accompanied by a child, so it was the first time we have been in. It was good to be out in the sunshine all together. We went for a coffee, then took Jasmine back to the hospital. Ruth set up her dialysis machine with three bags and connected her.

Champagne for Jasmine

Friday, April 25th, 2008

Jasmine at Searcys

Neil and I went in early today and disconnected Jasmine and did her medicines. Then we took her to St Pancras Station to watch the trains and have a glass of Billecart-Salmon in Searcy’s. Jasmine was not really impressed and fell asleep in the buggy. We brought her home and have spent the afternoon lying about. Jasmine is sleepy today after her vaccines, so feeding her is a bit of a struggle. In the evening Neil set up her machine with two weak bags, and one strong bag, which was rather difficult (Neil made me put this last sentence in *sigh*).

Vaccinations

Thursday, April 24th, 2008

Jasmine and her boots

Neil disconnected Jasmine’s machine this morning before going off to work and after jumping out of the way when Jasmine threw up all of her feed. She was not herself all day – not taking her feeds as she normally does and was a bit grizzly – they are taking a sample this evening to see if she is beginning an infection.

Jasmine is on 13 hours of dialysis at the moment as she is retaining too much fluid which is pushing up her blood pressure. She is also having a last bag fill of 60mls. The idea behind a last bag fill is that some fluid is left in the peritoneum during the day and continues dialysing until she is plugged back into the machine. The problem with small babies is that they often absorb the fluid and don’t give it back.  Everyone is tinkering with different solutions in order to see what works best for Jasmine.

Lunchtime we went down to Costa for our usual paninis and lattes and Jasmine watched the world go by until she fell asleep. She sits on my lap and looks like a little old granny wise to the ways of the world, having seen it all before. Then this afternoon she had her first lot of vaccinations and only cried for a short time. She had some sugary syrup to suck on as this has been proven to distract babies from the pain of injections.  She wasn’t interested in her dummy and so she sucked it from my finger.

By staying on the ward, I had the chance to practice the things I have learnt so far and was able to:

  • change Jasmine’s PD dressing
  • draw up medicines
  • do observations
  • set up the PD machine
  • connect Jasmine to her machine

We also enjoyed bathtime this morning before getting on with the day, and lots of feeds. Today gave me some idea of how life will be when we get home – except of course, I won’t be surrounded by lots of lovely nurses who support me in a million different ways every minute of every day.

Jasmine caused a stir on the ward today by wearing her pretty new dress teamed controversially with her Boro slippers. Everyone loved the dress but as the ward has Arsenal, Tottenham and West Ham supporters to name but a few, the slippers weren’t popular with everyone. Jasmine was very cool about it all and put her head back to stare at the lights on the corridor ceiling.

High blood pressure

Wednesday, April 23rd, 2008

Jasmine in her cuff

I went in early this morning to disconnect Jasmine from her machine. Jasmine was a little bit sick because she had just had her 8am medicines. After the disconnecting routine I chatted with our home liaison nurse about the various people who will be supporting us when Jasmine comes out of hospital. It is all a bit scary thinking about the amount of stuff and care Jasmine will need. However, it is fantastic that we are talking about her coming home.

Late morning Jasmine was given an automatic blood pressure cuff to wear for 24 hours as she still has high blood pressure and they wanted to capture her blood pressure many times to see if there is a pattern in its rising and falling. In this way they can get her stable more quickly.

It was raining this afternoon so Jasmine and I stayed on the ward and did a bit of snoozing and catching up with the footie on Sky Sports. I drew up her medicines and set up her machine and then this evening I connected her. It gets easier every time we do it. Her potassium levels are low this week so she is getting a potassium supplement.

Neil arrived later on and drew up some other medicines and fed Jasmine. She threw up the whole bottle and then went to sleep.

Disconnection and connection

Tuesday, April 22nd, 2008

Jasmine in the buggy

We got in early today so that we could meet with our dialysis consultant and our home liaison officer to think about moving forward. Everything is still up in the air for now, but even just thinking about going home is fantastic.

After our meeting Neil disconnected Jasmine from her machine for the first time. We then changed her PD dressing without supervision for the first time too. We also had another go at drawing up some of her medicines before Neil went to work.

In the afternoon, Jasmine and I met Trish for lunch and coffee. It was lovely to sit outside in the sun and chat about non-hospital things. Jasmine was admired by several people but took it as her due and snoozed through the compliments.

This evening, I prepared her machine and connected her for the first time.

Hello Kitty

Monday, April 21st, 2008

Jasmine in her Hello Kitty outfit

Mondays are difficult days as Neil goes back to work after the weekend and I am without my hospital buddy. Today was a good Monday because I brought Jasmine home for the afternoon. In anticipation I got up early, hoovered round and did my yoga. Then I went down the hospital and drew up Jasmine’s medicines and set up her dialysis machine.

Jasmine pulled out her NG tube this morning so no one in the street was stopping me to ask me what was wrong with my baby. I have been asked this several times and now have some answers:

  1. Nothing, she was born with that tube up her nose.
  2. Nothing, she fell over and landed on the tube.
  3. Nothing, the tube just got stuck.
  4. What do you mean? I thought all babies had tubes up their noses.
  5. Mind your own business, you nosy bugger.

Still not decided on which one to use.

We spent the afternoon cuddling on the settee and looking at each other. She is the most beautiful baby I have ever seen, with or without her tube.

A lovely Sunday

Sunday, April 20th, 2008

On the tube

This morning we hopped up bright and early and went down to the hospital. There we gave Jasmine a bath and then changed her PD dressing. After that we learnt how to draw up her medicines and put them all in syringes, ready to adminster them. Then, we came home on the tube and have had a lovely day lounging about.