Thursday, 24 April 2014

One down, one to go.

Jessica has now had the first of the two operations she is due within a few weeks of each other.

The first was a couple of weeks ago, and was to remove her tonsils and adenoids. This is an information sheet from Great Ormond Street Hospital where she had it done.

Jess was an absolute star. We went in the morning to the pre-admission ward, where we met all the ENT surgeons and anaesthetists, and got Jess ready for theatre:

We then went down to theatre, and I held Jess on my lap while she was put to sleep. The operation took about an hour, and then we were called to go to the recovery room to see her. When we got there, she was just waking up, and was obviously feeling a bit sorry for herself, and then she was taken to the post-op ENT ward, where she mainly slept for the rest of the day and night:

Clearly that is what is needed for a good night's sleep - a general anaesthetic, followed by melatonin - as the ward was ridiculously noisy, and I didn't get a wink of sleep!

The next morning, with the help of regular (and massive) doses of paracetamol and ibruprofen, Jess was on great form, we even began to wonder if they had actually done anything in theatre!

As the surgery hadn't been as complicated as the doctors had thought it might be, we were allowed home after just one night, which was excellent given how loud the ward was! Jess did so well, and didn't complain too much, although she wasn't particularly into eating anything, and we fully depended on the NG tube for all her feeding.

However, five days after the operation, we hit a complication. It appeared that it was too painful for Jess to swallow her saliva. She is not normally a "dribbly" child at all during the day, and I don't think I had realised how much she swallows! She was drowning in secretions - coughing, gagging and everything was constantly soaked, including the dressing holding the NG tube in.

Inevitably the NG tube therefore fell out, despite our best efforts, and a midnight trip to A&E took place. Here they replaced the NG tube for us, but wanted to keep her in for observation in case the re-insertion of the tube had disturbed the operation site, and caused any bleeding. They were also worried about all her secretions, and the consequence of these on her oxygen levels. We were admitted to the children's ward for two nights, for observation, and commenced a medication (a Hyoscine patch) to dry up her secretions, and therefore make it easier for her to cope with them.

She is now much better, and back to her more usual happy self. She is eating again (well, as much as she did before) and has returned to school.

I found the whole thing incredibly draining and exhausting  - three nights in hospital with no sleep, and even when we were home, I was setting my alarm clock for three hour intervals so I could give her pain killers - it is so hard when she can't tell us when she is pain, and what is the matter when she is upset. But she did brilliantly, I am so proud of her - she puts up with so much, and yet so rarely complains.

It is a bit daunting to think we have to go through it all again in just a few weeks for the gastrostomy, but we definitely need to lose the NG tube, life will be significantly easier then.

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