Thank you so much everyone. <img src="i/expressions/rose.gif" border="0">
I brought her up on Monday to be seen, she was admitted later that day and we were discharged Friday. If she'd been on IV's before I think it would have been a bit sooner. It also took changing her tobra dose twice to get levels right- so each time dose changed it took several infusions before levels could be drawn again. I am assuming next time she needs tobra they have a better idea how she metabolizes it and what dose to give her to start with. The other med is ceftazidime.
Each med infuses in a little under an hour, and fortunately she can do them back to back~ so start to finish w/cleaning, flushing etc the IV session takes just under 2hrs to finish. She was on a schedule that naturally included a middle-of-the-night dose at the hospital but the last day there (once levels were right) we started advancing times by an hour each dose and by the time she'd had a couple doses at home we'd gotten onto our 6am, 2pm, 10pm schedule. At least after several doses the cleaning and flushing part doesn't feel as awkward as it did at first, I can do it faster now. I am SO glad I didn't have to go home with an IV pump or bags to hang, etc.
Given the drop in pft's, and she is bringing up SO much junk during airway clearance... I am sure that's why they want her doing 4 treatments a day. They have us doing albuterol and pulmicort 4x/day; pulmozyme and hypersal each twice/day. I think she's finally starting to break up stuff down there given what some of it looks like.
As hard as it is to have her hooked up to stuff more hours out of the day, I can't let the feed stuff go now. She needs a LOT of extra hydration and Miralax to stave off DIOS when she is sick (don't completely know why, but every one of her severe bouts have been on the heels of an exacerbation) and nutrition can't be compromised when she's sick due to her pattern of weight loss during illness. That can be timed with the abx at least and the feed pump can be worn in a backpack... I tucked the IV ball into the outside pocket of the backpack and that seemed to work well to keep all the tubing out of the way.
I do agree that this can be a good teaching experience. We do our best to involve Emily in all of her treatment (and she can do quite a bit of it independently) and by the end of this she will, no doubt, be pretty familiar with how it all works. We can enlist her help in getting stuff 'set up' prior to what we have to do to sterilize everything and as she gets a little older she can do more and more.
They told me while we were there that they don't send all of their patients home on IV's, that it's only the ones they feel confident in being able to take it on~ being compliant with resp. treatment, taking care of the picc safely, giving the meds as they should be, etc. And that if it worked out that we just couldn't do it, they would let us come back. But that said, home is a better environment and SAFER, as LouLou says.
