Friday, 30 May 2014

Being pragmatic

This was how I was recently described by a hospital pharmacist on one of our numerous recent hospital visits. Being pragmatic. Being pragmatic can mean being logical, practical, realistic. But the context it was used in, I'm not sure if it was a compliment or not!!

The ward pharmacist was doing her daily rounds when she commented that Jessica is on a very high dose of one of her medications, one of the several that she takes for reflux. Now we know this. Jess was started on a reasonably low dose, but it was gradually increased to a level that was needed to manage her reflux, and make her as pain free as possible. The dose is now just above the recommended maximum for her age and weight, but everyone is aware and the prescribing doctors are happy with this. However, the pharmacist did seem very concerned, so I asked her if there was any known risks of being in such a high dose that I wasn't aware of, or that I should look out for.

The answer was that no-one knows what the risks are above the maximum dose as there hasn't been any research into this yet. However, the drug is known to be safe at this dose in the immediate term, but any long term consequences, such as when Jess reaches old age, or any effects on children that Jessica may have are as yet unknown. At this, I must have given a rather dismissive response, as she continued to go on and say that surely I would rather know the effects of a drug that I am giving my daughter?

I agreed in principle, that yes, it would be reassuring to know that all Jessica's various medical treatments are completely safe, but that every intervention comes with a risk. I continued to explain that Jess was really suffering with her reflux and this dose is the only treatment that helped her. I explained that we don't know what the future holds for Jess -will she live to old age? Who knows. And unless there is a very dramatic development in genetic research and treatments, she pretty definitely won't be having children.

Given that Jess was actually quite unwell at this point and this admission had been preceded by an emergency ambulance and not very much sleep, I was probably a bit too tired and stressed to be having a polite philosophical discussion.

I quite bluntly said that Jess is severely disabled, and a lot of her life is spent putting up with stuff that no child should have to put up with. I would not let her suffer more from her reflux when we have something that will help her just in case there are some side effects in a future that Jess may not have.

The pharmacist just replied "that's very pragmatic of you" and walked away.

1 comment:

  1. Oh you poor girl. I just want to drive over and give you a big cuddle.

    Pharmacists have to know these things, and a good one will make sure that parents and patients know them as well. I know - Dad always did. But however much they knows about the drugs, and however much they care, they can't possibly know everything you and Colin and Jess are experiencing. You have to be pragmatic - it's your lives.

    It sounds as if she was distressed by Jess needing that dose and by the stress that you were obviously under. She probably couldn't say anything more.

    Give the girls a kiss each from us, and be kind to yourself. You're amazing, both of you - you know that?
    Rosey and Chris XXxx


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