Lately, I’ve been really, really rubbish at making decisions. I will ponder even the most irrelevant of choices to death. I pester QB with questions about “which do you think…” on the most mundane of topics. I’m not sure what has caused this bout of indecision (I’m not always like this) but at times it has felt almost crippling. I just can’t seem to make up my mind about anything.
Which is why it is ironic that now QB and I are facing a major decision that will have a long-term effect on Miss Z’s healthy, quality of life, and potentially her longevity as well.
Forget trying to decide if I want to make chicken or pasta for dinner – this is a choice that will have a direct and serious impact on Miss Z’s life.
The story starts way back in April, when Miss Z was hospitalised for pseudomonas – a type of chest infection. At that point, she had already had pneumonia – which was managed at home – in January and persistent bronchitis in February, where she spent a few nights in the hospital. The specialists who saw her during her stay in April decided that the reason she was suffering from chronic chest infections was that she was aspirating (breathing into her lungs) the reflux, vomit and secretions that constantly plagued her. As a result, she had fluid in her lungs that are a breeding ground for all sorts of nasty bacteria.
There is no solution to this problem. Miss Z is likely to continue to suffer from recurrent chest infections for the rest of her life. And the chest infections are one of the primary conditions (along with seizures) that will limit the length of her life.
However, there are two options – two different surgical procedures – that can potentially limit the amount of fluid that get into her lungs.
The first is called a gastrojejunostomy, or GJ tube. This involves inserting her feeding tube into her jejunum (the middle part of her small intestine). This will allow her food to bypass her stomach, which means there will be little fluid in her stomach to come back up.
The second is a fundoplication. This involves wrapping the upper part of the stomach around the oesophagus, which stops fluid from coming back up.
Miss Z is a potential candidate for both procedures. And although her various doctors have had input, it is essentially down to QB and me to decide which procedure she will have.
This feels both reasonable and absurd. After all, we know her best, we are responsible for her care and balancing her quality and quantity of life. But neither of us has a medical background, or for that matter even know in real life anyone who has a GJ tube or fundo, so how on earth can we be expected to decide what is best for her?
The problem is that they both have pros and cons.
GJ tube pros:
- It is an easy and straightforward surgery (it might not even require Z being admitted overnight) with few risks aside from the usual ones associated with general anaesthetic (GA).
- It is reversible – if it doesn’t work, they can easily remove it.
- It can be done quite quickly.
GJ tube cons:
- She would be on a continuous feed nearly all the time. She could come off her feed to swim or have a bath, but she would need to be put straight back on her feed afterward. This means Miss Z would be connected to a feeding tube and pump constantly.
- The tube can come out of the intestine – for example if she is very active or is coughing a lot – and would have to be reinserted under GA in the hospital.
- Even if it doesn’t come out accidentally, it still needs to be replaced every 6 months or so – which again needs to happen under GA.
- It wouldn’t restrict her freedom of movement, or even the ability to have tastes of soft foods in the future.
- It would prevent all the fluids in her stomach from coming back up (whereas the GJ would just stop her formula, not meds or swallowed saliva).
- Once it is done, its done – unlike the GJ tube which will need to be changed regularly.
- It is major surgery, even though it is done laparoscopically. It means more time under GA (never a good thing for a child with respiratory problems) and a longer recovery time.
- It will prevent her from refluxing / vomiting, but she may still retch. And while vomiting is obviously something we want to prevent, I do wonder if it will make it more difficult to manage her secretions (the mucus and salivia that most people swallow automatically, but which pool in the back of Miss Z’s throat and upper respiratory tract) as she won’t be able to clear them by vomiting (which is what she does at the moment).
- It isn’t reversible. If it doesn’t work – or makes things worse – then she is still stuck with it for the rest of her life.
To make matters worse, Miss Z’s paediatrician has just left on a 7-week holiday overseas, making it impossible to solicit her thoughts on the procedures. So, I’m trying to organise a chat with Miss Z’s respiratory consultant – if only to get a better idea of which procedure she thinks will have a greater likelihood of reducing Miss Z’s chest infections – which, after all, is the point of this all.
However, as anyone who has consulted various medical specialists, it isn’t always easy to access them outside your allotted, once-every-three-months appointment slot. And even then, no doctor is going to make the decision for us.
That will be left to QB and me.
Time for me to start making up my mind.