Knowing all that, I think it's easy to see why I'm having to work at keeping myself from being concerned. If 200ml/day was cause to keep her from leaving the hospital 7 months ago, then why is 470ml/day okay now? I haven't heard back from the nurse at all today and I'm hoping that means that the doctor will be calling me this afternoon. I'm anxious to know what her intentions are and how long we'll be letting this continue before we do something to intervene. I don't know what that would be, but this isn't healthy.
Last time the nurse emailed me back yesterday she told me to keep adding pedialyte every 4 hours equal to the amount she had lost during that time so that's what I've been trying to do. Yesterday I replaced 420ml of lost fluid with pedialyte and then ran out of hours in the day to run it in. So like I said, pedialyte is probably keeping us out of the hospital.
That brings me to another point. (this is mostly for other parents of tube-fed kids) From time to time, the supplies we have needed from home health have changed. She started needing the pedialyte so we were getting that from home health as well as her formula. After the doctor said she didn't need to have it mixed with her formula anymore, I stopped giving it to her so I stopped getting it from home health even though our insurance had never changed the status of their approval. Then in February when Raya had ear infections and I didn't want to give her formula while she had a fever, I realized that I should never have stopped ordering the pedialyte. I have now learned that even if you don't think you're going to need something, if your insurance allows you to keep getting it, KEEP GETTING IT. You never know when you might suddenly find yourself needing it, especially when it comes to formula or pump supplies.
So anyway, for now we're pumping in the pedialyte and readjusting to life with 19 hours a day on the feeding pump. She is definitely keeping us on our toes! (in more ways than one :)
|Saying "Hello" on her "phone" :)|