The boy was asleep when I arrived this morning. Normally, he's awake and you get thrown into the care routine with no time to take stock. Not today. And I had a sudden realisation of just how much equipment he has keeping him stable:
- saturation monitor attached to his toe to monitor blood oxygenation and heart
- feed pump attached to his gastrostomy
- oxygen cylinder for nebulisers
- a big oxygen humidification machine with an 'elephant' tube attached to his trachy.
He looks so small and vulnerable in such a large bed among all the equipment.
It was two years since diagnosis the other week. Such a long time. Hard to remember we had a life before it. He's been in hospital for longer than he's been out of it. I do wonder whether we will ever be in a position where he doesn't need all of it.
He's soon awake. In a good mood. Wanting to lie back in bed but cheerful. Auntie coming adds to his good mood and he is very affectionate towards her. Holding her hand while watching TV. A reasonable day for a change. But marred by a late afternoon visit from the respiratory specialist who is suggesting that the delayed recovery may be a result of low level continuous lung damage arising from the continuous saliva trickle into his lungs as a result of his damaged swallow i.e. chronic damage. He says we may have to keep the trachy cuff permanently inflated. This will upset the boy so much and stop him talking. Being so tired after a long week I can't adequately express how hard this hit me and how upsetting this feels.
1 comment:
Oh, the heart breaks.
*no words*
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