On strike

I went on strike last night. I couldn’t face doing another thing and Neil had to take over when I downed tools and went to bed. I am ashamed to say that I was feeling sorry for myself. I didn’t follow my own advice about sleeping, eating and following a routine and got a bit overwrought. We were late getting Jasmine on her machine and into bed which made her overtired. She was fighting sleep and Neil and I had a bit of a bicker in the bedroom and Jasmine threw up. Neil made me laugh at this point by saying, “Oh no Jasmine, it’s not your fault.”

This morning after a good night’s sleep I felt much better. Being in the doldrums is such a waste of time, I am not doing that again. And poor Neil is knackered as he went on vomit-mopping duty during the night. Although, he kept sleeping on the job and needed supervision. You just can’t get the staff nowadays.

Yesterday, Jasmine and I went to the clinic at GOSH and Jasmine had her bloods and other checks done. Her blood pressure was high again whilst at the clinic (130) so they suggested putting her on stronger dialysate. However, last night when it came to putting her on dialysis her blood pressure was too low (78) so we left her on her usual program after much debate and phoning the ward and taking her blood pressure a million times.

Today I was doing random blood pressure checks and it was a bit all over the place: 90, 98, 74, 60 and then tonight it was 100 so we put her on the stronger combination. At the clinic they suspected that she is retaining fluid even though she doesn’t look like she is and her blood pressure is one of determining factors – hence, my checks. They also changed her medicines and the amount of fill fluid during dialysis. So with these changes I felt a bit lost. Routine makes me happy (never thought I would ever hear myself say those words) and even little changes seem to knock me off kilter. Although, I have less medicines to draw so that is one good thing. And she is vomiting less during the day.

Yesterday was also the first day that I was by myself at home and at the clinic so I had time to think about things. I had been warned whilst still in hospital that this might happen. In the hospital you feel normal as you are surrounded by people in the same situation but outside you realise that you are not ‘normal’ (if there is such a thing) as people look at you all pityingly (mainly ‘cos of her NG tube – cheeky buggers) and then once alone, you have time to dwell on less positive thoughts.

Today inbetween blood pressure checks I was doing a fluid balance – less glamorously put, I was weighing dirty nappies to try and figure out how much urine Jasmine outputs with respect to how much goes in feedwise. I am still not sure and might have to have another go another day.

My mate Wayne came for a visit and was highly amused when Jasmine pooed on the settee whilst I made a hash of changing her nappy – I was totally distracted by this nappy weighing business. It was nice to have Wayne here as I got to chat about other stuff and he got to see how we go about doing sterile PD dressing changes. Jasmine was mesmorised by him and was hanging on his every word about C# and Java, until she got distracted by her feet and was waving them about now that she has figured out that they are connected to her.

Her eyes are changing colour and are now a blue-hazel whereas before they were deep, deep blue. She goes to sleep when listening to Stan Getz but smiles a lot during Charles Aznavour. When Neil came back the other day from the gym she started cry and he reckoned it was because she was forced to listen to Charles Aznavour and that would make him cry too. But I know that really she was upset that we had to stop dancing because it was time for lunch.

2 Responses to “On strike”

  1. andrea says:

    Dr ruth lol. your doing a grand job. It’s amazing what progress you all making. Thanks for the card. Have you made any plans for your b’day? I miss our chats, but our lives have changed dramatically this yr. Hope to catch up one day. lots of love to you all. xxx

  2. Seb P says:

    Hi Ruth,

    Just to let you know am thinking of you, Neil and Jasmine and following the blog. Hope to catch up with you at some point, once you have a bit more free time on your hands.

    Lots of love,

    Seb

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