We've now been in the hospital for 3 months. Harley has beat the odds more than once and is still fighting her little heart out as we speak. She's one determined little girl and will fight as long as it takes! Okay, now for the update:
Harley has still been throwing up every day. The doctor's wrote the orders for the J part of the GJ tube to be put in (to extend it to the intestines so she CAN'T throw up) and has contacted the surgeon, so I guess it's now just a matter of getting it scheduled.
Also, Harley's O2 (oxygen) has been dropping when she sleeps. It's normal for anyone's oxygen to drop when they're in a deep sleep, but Harley's has been dropping a little lower than they'd like. It's not too bad, only drops 1% or 2% below where they want it, but it's not good, either. She now either gets oxygen throughout the night or what they call a 'blow by' or something like that where we set up the O2 mask by her face, but not on it, so it blows O2 in her face. Still, it's only on 1 liter, so that's not bad.
We finally finished her antibiotic drops for her eye Sunday and the antibiotics for her ear infection are done tomorrow. Yay! Two less medications for Harley! Hopefully that's the end of the infections and such and Harley and her body can just focus on getting better.
Last thing I'll add today: we've finally signed a DNR. But, let me add, the only thing it prohibits is putting her on another ventilator. We still want everything else done, if need be like CPR, giving her O2, AED (heart shocking device if her heart stops), etc. It is JUST for ventilators. It's my husband's wishes, I'm more of a 'case by case' basis person and for me it all depends on how Harley's doing at the time. I understand his wish for her not to be on a ventilator, though, and I agree that it was a sort of 'torture' for her (not really, but it was such a discomfort that we don't want to put her through that again).
All in all, though, Harley is still fighting like the big girl she is. She still recognises her dad and I and kisses us back (when she wants to) when we kiss her lips (she puckers her lips against ours). When I touch her chin or rub her cheek she'll give us a faint smile, too. I still have my Harley and that's all I can ask for. : )
Harley has still been throwing up every day. The doctor's wrote the orders for the J part of the GJ tube to be put in (to extend it to the intestines so she CAN'T throw up) and has contacted the surgeon, so I guess it's now just a matter of getting it scheduled.
Also, Harley's O2 (oxygen) has been dropping when she sleeps. It's normal for anyone's oxygen to drop when they're in a deep sleep, but Harley's has been dropping a little lower than they'd like. It's not too bad, only drops 1% or 2% below where they want it, but it's not good, either. She now either gets oxygen throughout the night or what they call a 'blow by' or something like that where we set up the O2 mask by her face, but not on it, so it blows O2 in her face. Still, it's only on 1 liter, so that's not bad.
We finally finished her antibiotic drops for her eye Sunday and the antibiotics for her ear infection are done tomorrow. Yay! Two less medications for Harley! Hopefully that's the end of the infections and such and Harley and her body can just focus on getting better.
Last thing I'll add today: we've finally signed a DNR. But, let me add, the only thing it prohibits is putting her on another ventilator. We still want everything else done, if need be like CPR, giving her O2, AED (heart shocking device if her heart stops), etc. It is JUST for ventilators. It's my husband's wishes, I'm more of a 'case by case' basis person and for me it all depends on how Harley's doing at the time. I understand his wish for her not to be on a ventilator, though, and I agree that it was a sort of 'torture' for her (not really, but it was such a discomfort that we don't want to put her through that again).
All in all, though, Harley is still fighting like the big girl she is. She still recognises her dad and I and kisses us back (when she wants to) when we kiss her lips (she puckers her lips against ours). When I touch her chin or rub her cheek she'll give us a faint smile, too. I still have my Harley and that's all I can ask for. : )
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