A bit of background - Bee is TPN dependent, and has been for 5 years now (all of her nutrition comes from an IV catheter in her chest as she is unable to digest anything). The TPN brings with it the risk of liver failure (hers is failing) and severe, potentially fatal infections - we have a love/hate relationship with it, it keeps her alive, but has nearly taken her from us half a dozen times in the last year alone.
In the last several months, we have been trying to decrease the TPN she receives and increase her gastrostomy feeds to see if she has recovered any function at all. It seemed to be going reasonably well, so last week, the GP had me make a big change, and have Bee run her TPN for 12 hours overnight, and then tube feeds through the day. We went in for her weekly hospital visit today, and she has lost over 1/2 kilo and her bloodwork looks terrible across the board.
I shouldn't have, but was really feeling encouraged about this - to the point that if she was able to manage it and we could continue with the decrease as the GP had been suggesting it, she might have been TPN-free by Christmas for the first time in years.
Now, I am really doubting myself - is this for her or for me? I am the one who is responsible for all of her cares, and I burned out ages ago. Intellectually I know that it is reasonable for us to try - and if it works, so much the better, but emotionally, all I can think is "why should I even try if it is going to backfire?".
Her disease is degenerative and terminal - foolish me to hope for improvement :(
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18 replies
BeeMom · 22/11/2012 18:50
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zzzzz ·
22/11/2012 20:18
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PolterGoose ·
22/11/2012 21:42
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zzzzz ·
23/11/2012 14:48
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