Surgery

Surgery this evening.

After finding out in March that the port that delivers Pudding’s trial medication to his brain is no longer working properly, he is having it replaced today.

This morning I chased him and let him climb on my back  and tickled him until we were both in helpless giggles, as I knew we wouldn’t be able to do that for a while.  I watched him eat a very early lunch knowing that in a few hours he would be looking at me with those accusing eyes and repeatedly asking for ‘bibit’ (biscuit). He kept running away with the bag I was trying to pack and for once I didn’t get cross or frustrated because I knew that he’s going to feel reluctant to move at all for the next week or so.

Pudding was very excited when we got back to the trial ward in  Manchester. We’ve not been for three months now so he was obviously keen to make up for lost time, running up and down the corridor and shouting ‘Found you!’ at all the nurses. Very cute, but it was difficult to share his enthusiasm knowing that in a few hours I had to sign a consent form for surgery listing ‘permanent nerve damage’ as a potential side effect.

The anesthetists here are fantastic, and experienced with the short neck and difficult airways that Hunter Syndrome produces. I trust them with my son’s life but I wish I didn’t have to.

At 6pm we walked down to surgery with him complaining all the way. It was nearly his bedtime. He was tired and hungry and had had enough. I watched his eyes roll back into his head as the anesthetic took effect. Now we wait for three hours until we can see him in recovery and listen to those pitiful cries as he tries to tell us that he feels rotten and he hurts and he doesn’t know why. And I’ll feel helpless because I can’t explain to him why he needs to go through this.

We’ll stand ready with the sick bowl and obsessively watch the SATS monitor over the next few hours. The TV will stay on for a week and we’ll check his dressings for any leakage of spinal fluid.

It’s his sixth general anaesthetic since diagnosis almost 2 years ago, and we’ve got used to the routine but it never gets any easier.

Comments

  1. Joanna Mitcham

    Ah, Sally – big hugs to you all x

  2. Ger

    He’s a super hero just like his mammy. I’m thinking of ye all guys xxxx

    1. HuntersMum

      Thank you, gorgeous! He’s done really well with it so far. Looks like recovery is going much better than last time.

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