Why self-care flies out the window …

Last Wednesday I got up early to take Mitchell into Starship Hospital for an MRI. He had to be there by 7.15 am, so I was up and in the shower at 5.45. I am NOT a morning person, so this is tough for me – even living sober I have not grown to like early starts.

We left home at 6.30 am and surprisingly the traffic was still pretty good – school holidays always seem to make a bit of an improvement on the southern motorway to the city. It was good to arrive on time and while I parked CB (carer) took Mitchell off to the Day Stay unit to check in.

His MRI was scheduled for 8.30 and he had stopped his fluids at 2 am, so no breakfast allowed, but I was happy that we had a nice early appointment so that he would not get grumpy waiting around. Things went smoothly, and after being weighed, and filling out the forms we headed down to pre op with the nurse to meet the anaethetist. Mitch has been through this before with multiple surgeries, but this was the first time since his tracheostomy was removed that he was having a procedure and needed anasthesia via a mask.

Now, a couple of weeks ago Mitchell had been bitten by ‘something’ – not sure what, but as a result he had an abscess by his ear, and the GP had suggested that if antibiotics didn’t clear it, that I should take Mitchell to A & E, for it to be lanced. Earlier that morning, I had asked the day stay nurse if someone could look at it, and while Mitchell was in having the MRI a member of the surgical team popped by to say that the abscess was very close to his ear and could be dangerous if left. Therefore, they would put him on the acute list for surgery that afternoon. I was pretty happy with that – this would mean one less visit to the hospital. I popped off to get myself a nice flat white from the allpress coffee shop over at Auckland hospital. I love, love, love their coffee.

The morning was travelling very well.

I wish the afternoon had gone as smoothly.

After Mitchell’s MRI we popped back to Level 5 Day Stay (they are temporarily located their while a renovation is happening) and started our wait for the afternoon list. Our nurse and the surgeon told us that as we were now on the list, it could be a few hours until the 2nd theatre visit. Now, Mitch is a 15 year old teenage boy, and while he has to have a puree and liquid diet due to his anatomy, he still has the appetite of a young man of that age. I asked the nurse about what he could eat, and of course, as he would be having an anasthetic, he was unable to have any ‘real food’. She let us know that he could have clear fluids (including pedialite) up until one hour before the surgery. To help us out she went off to get the pedialite, in place of water, as it would help Mitchell to feel a little less depleted. If you have ever experienced hangry, Mitchell’s version of this is at the top end of the scale, as when combined with autism and a possible lack of understanding as to why we are not giving him food, I was very relieved that we could give him the pedialite. And we did.

We were called up for his surgery mid afternoon and his last liquid was only about 40 minutes prior, but as the nurse suggested, by the time he would go through we would be well clear of the hour’s time we needed.

In he went and off I went once again to the coffee shop. It’s expensive hanging out in the hospital when you resort to these treats (but that’s another story).

I got the call back from the surgeon around an hour later to say the surgical procedure had gone well, but that there had been a problem with the anasthetic. He just informed me about the drain they inserted to reduce the inflammation and that post op would ring when Mitchell woke up.

That’s when the drama started. Once I was taken through to post op – I was informed that Mitchell had aspirated all of the 400 mls of pedialite and this had meant he had to be intubated, plus that his lungs had collapsed and now he would need to be admitted to PICU. Now, he has had a lot of anasthetics for some major surgeries, and never before have we had a problem, so I was shocked.

It was explained that because he had two G.A.’s in one day, that his digestive system had slowed right down, and the pedialite had not left his stomach. Unfortunately, the anathetist had not aspirated his tube as he did not know that we had given the pedialite via the NG.

So began a week in hospital.

How do you practice self care in hospital? It is bloody hard, and almost difficult. Why?

  • you lose control of the routines that keep you going
  • you spend hours waiting for ‘things’ to happen that you could do quickly at home
  • you buy and eat takeaway food as it is more convenient,
  • no-one does your chores at home while you are in hospital,
  • your washing piles up and becomes as tall as Mt Everest
  • you have little or no sleep
  • you pretend you are coping and inside you are a mess
  • your budget is blown out by the cost of petrol and parking
  • the other members of your family get no care and attention
  • you feel like a pariah as your son stays awake all night and shouts the ward down, so ‘everyone’ knows you are that Mum who can’t keep her child asleep

And if that’s not enough, life goes on at home without you. Members of your wider family have things going on. You are so tired of telling people your dramas, that you don’t even go there – so no-one except your close friends or family even get a call to say that you are in hospital again.

Self-care is not an option.

What I do when this mode kicks in.

  • Talk to my Mum (she is my emotional rock)
  • Share the load with my husband (he is also living our life, and trying to hold down a job, that supports the cost of this)
  • Try to not be bothered by the judgement of others – oh my god, this is so hard. Trying to catch 20 mins of sleep in a hospital room, always when you lie down, someone arrives at the most inconvenient time.
  • Get past the fact that when I sleep, I snore, and others will hear that.
  • And ifI have enough money, I always buy nice coffee and a book or magazine from the hospital store.

We are back home now, and it’s a tough time, as M is not sleeping and the week following a hospital admission is always tough, as we are sleep deprived and you don’t bounce back quickly once you hit a certain age.

Right now, I need to go and buy some washing powder to attack another washing mountain. So, I’ll update when I can.

Lots of love Cherie

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