Ouch! Quit it! Ouch! Quit it....

Strange is the word I use to describe the previous 36 hours. Aurelia's condition steadily improves, but at the same time managing her care becomes increasingly difficult. Since last writing, Aurelia lost her breathing tube, ended all IV pain medications (minus a small dose of morphine through her g-tube), resumed normal feeds, lost her central line, avoided any fevers, and is weening off oxygen.

I should jump for joy! At the same time, this is no three month old largely devoid of personality; Aurelia is nine months now and tremendously capable of self-expression. Discomfort, impatience, pain, exhaustion, irritability, all these and more our girl now shares, vociferously, with entire pod of babies.

Let me clarify. As Aurelia came off her breathing tube she expressed joy, but suffers irritably from a terrible cough and partially collapsed left lung (not something unusual - it often occurs in little ones who are kept sedated for some time). Angrily, Aurelia fights against her high flow nasal canula, the treatment for her lung problems. Fed up as she was with the breathing tube, the canula must feel like torture - she had this big tube removed, she fought to breathe on her own, and now they are forcing even more air into her lungs.

Now that the majority of her pain medication has stopped, Aurelia's color and personality return vigorously, but with that comes increased jaw sensitivity and discomfort in her leg from her central line. I would almost trade away the smiles that arrive as her pain medication stops, especially if it meant no longer watching her twitch, shake, and moan constantly from narcotic withdrawal. For some reason watching her filled with addiction fueled agitation and ache breaks my heart near as much as seeing her sedated into a stupor.

And if any of you know an addict, you know how terribly difficult it can be to rest. Aurelia has managed only six hours of sleep in the last 36 and that came thanks to diazepam's ability to take the edge off her craving. Hopefully, the combination of getting her central line out and maximum doses of ibuprofen will give her some rest.

Of course I know that this is all preferable to where she was four days ago, but seeing her so distressed, watching those emotions play across her face, it breaks my heart in ways surgery and long term stay hasn't in the past. Here's to hope! Maybe the step down unit soon. Maybe a chance at getting home, even for a few days, before we have to return for her open heart surgery. It's possible!

Like my new blanket?