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.

Sunday, 25 May 2014

It's a love/hate thing

I simultaneously both loved and hated the nasogastric (NG) tube that Jess had from January until May this year. That's misleading actually, I didn't love the tube itself. I loved the difference it made to Jessica's (and our) life.

Nasogastric tubes are difficult to use. They don't look they they are - it looks like you just attach a feeding tube or syringe to the end and push it in. But looks can be deceptive. They are also dangerous if not used correctly.

The NG tube goes up the nose, down the back of the throat and then into the stomach. However, when it is being inserted, there is always the chance that the tube will end up in the lungs instead. And even if it is inserted into the stomach correctly, it can move into the lungs or high up into the oesophagus at a later point.

Because of these risks, an NG tube must never be used without the position of it being established each time and making sure that you are 100% certain it is in the stomach, as any feed, water or medicines entering the lungs could cause pneumonia.

There are two accepted ways to check the position of an NG tube. One is by X-ray, (not an option when you are at home!) and the other is to withdraw (aspirate) some stomach contents up the tube and check the acidity of it on some pH paper, as stomach contents should always be acidic.  However, even this is not as simple as it sounds. For one, Jessica is on a lot of anti-reflux medication which can change the pH of stomach contents, rendering the results you get difficult to interpret.

And that is if you are even able to aspirate any stomach contents! If you can't, the advice is to put the person on one side for twenty minutes and, if still unsuccessful, put them on the other side for twenty minutes. Not easy when you are out and about in the wheelchair!

Other issues are keeping the NG tube in - as Jess doesn't have any real functional hand use, she was never able to pull it out like some children do. However, it still fell out several times and needed re-inserting - either by me, the community nurses or by going to A&E.  Jessica hated having the tube put back in. Jessica rarely complains about anything, but she hated this and also having the plaster put on her face to hold the tube in place. She would get very distressed.

However, despite all these issues, the NG tube reformed our lives Someone commented on how quickly Jess deteriorated and went from eating a full oral (albeit puréed) diet to being dependent on the NG feed. However this isn't entirely true. Jess didn't deteriorate - the speed at which she moved from oral feeding to NG feeding was more indicative of how much Jess (and we) were struggling before the NG tube was in place.

Jess likes eating, but finds it exhausting. She used to choke on thin liquids like  drinks and medicines, meaning that we ended up using a spoon and a thickening powder (which thickens liquids to a custard-like consistency) to give her drinks and medicines, but with the best effort in the world (and a significant amount of time each day) she was barely having 300 ml of liquid a day. Mealtimes were difficult too - especially in the evenings when Jess would be really tired. Meals would take up to 90 minutes, and involve music, television, us singing and dancing - anything to try to keep her alert and able to swallow her food. Going out anywhere needed careful planning - the timing and location of meals couldn't be left to chance. We would have to carefully research and book for any trip out we made, and make awkward requests when being hosted at someone's house- which did not always go down well. Travelling was a nightmare and giving Jess medicines was very difficult too -even when using a thickening agent. She would never swallow the full dose (not great for anti-epileptic drugs!) and we couldn't give her anything orally in the night- like Calpol for a temperature for example, as she would be too sleepy to swallow it safely.

I think it is only now we are realising just how difficult and stressful feeding Jess was. The NG tube has now been replaced with a Gastrostomy, which eliminates a lot of the issues presented by the NG tube, but keeps the benefits! Her routine now is as follows: Jess still eats breakfast normally (she has mushed up weetabix with warm milk). She then has a small feed through the tube as a mid-morning snack, but is also offered something like a yoghurt, chocolate mousse or mushed up fruit if she wants it. She is also offered a puréed or mashed up lunch - if she eats it, fine, if not she has another feed through the tube. Mid-afternoon, she is offered another snack and has a feed as before, and then at tea time, when she is always too tired to swallow safely, she has a full tube feed. All fluid and medications are given through the tube.

It is a bit sad that things have come to this, as Jess has always really enjoyed her food. However, it was obvious just before she had the NG tube put in, that eating often just took too much effort for her, and ended up just being a stressful and upsetting experience for all concerned. Now she gets offered things we know she likes, and she can decide if she feels up to eating it. At weekends, I try and offer her her favourite foods (lasagne, bolognese, shepherds pie etc), and she will often force  herself to eat it, even if she looks completely exhausted to us! We will keep asking if she has had enough, or if she wants more, and she will clearly indicate that she wants to keep going. She then gets very grumpy if we decide that she really should stop eating if she is coughing or struggling etc.

We can be a lot more relaxed about mealtimes now, allowing us to go out more and be more flexible. Jess is happier too - if she is too exhausted to eat, it doesn't matter. Fluids, medicines and mealtimes are no longer the stressful events that they were. We were really upset when we realised that the gastrostomy was inevitable, but actually, it has turned out to be the best things for all all of us.