Jasmine Stalker-Firth

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.

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*).

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.

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.

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.

This morning Jasmine had her hearing test again. The test needed her to stay still, preferably asleep. We spent a long time waiting for her to snooze, but then of course everytime she was settled the audiologist would have to put something in her ear which woke her up. So, the test took two hours in total. It was funny as at one point the nurse looking after us today came down from the ward with Jasmine’s feeds and medicines, bringing Jasmine’s baby neighbour in a buggy, so it felt like a ward outing. This made me laugh for ages,waking Jasmine of course! The test results were good: Jasmine’s hearing is fine and the pathways from her ears to her brain are clear.

Jasmine’s blood pressure has been up and down for a couple of days so she was put back on dialysis. I set up her machine and then connected her for the first time this evening. We were disappointed as we were hoping that she might be able to stay off it for a longer time, but it wasn’t to be. It is best to put her back on whilst she is still ok and not feeling ill, so that she can continue to grow.

She was good fun this afternoon. We went for coffee downstairs and her socks kept falling off so we made lots of friends who put them back on for her.

I went in early before work today. Jasmine had thown her medicines up earlier. I gave her her feed, which she guzzled down. I then wheeled her up and down the corridor in her buggy for a little while. She was looking very cute in her pink dress again.

In the afternoon Ruth took Jasmine outside again. She went to Pret a Manger for her lunch and enjoyed looking at the lights and listening to the jazz (nice!). She is getting in to her trips around London.

Jasmine’s blood pressure was a bit high at times today. Apparently her bloods are still acceptable, they are going to continue monitoring them closely.