So our first night at home was a LITTLE rough. Home health met us here at about 7, when we finally got home. Brought the feeding pump, and showed me how to use it. In like 2 sentences. Didn’t tell me how to prime it, I forgot to ask. No owner’s manual.
He left, I looked thru the supplies. Missing two of them. Call. They don’t know what I’m talking about. They send something else. At 10.
Still not right. Meanwhile, I was supposed to start a feed at 8 and his overnight at 9. Called and their condescending on call nurse told me I needed to make it work for the night, and iwas like “oh my gosh, I am TRYING to make this work, but I can’t figure out the stuff I have here, it’s NOTHING like what I’m supposed to have.” She eventually, using extremely poor description skills, told me a way to use what I had to make it sort of work. Fine. And it sort of worked. But not great. PS, she should NEVER be a phone nurse, EVER. She didn’t finish half of her sentences. I hate people who trail off mid-sentence.
Also, pharmacy didn’t have the Calcitrol and gave us the wrong iron. Discovered this 2 minutes after they closed.
This morning was similarly rough. I spent the entire morning on the phone. First, called Gtube nurse at UIHC to please straighten out the suppl issue. She called me back and said home health tried to tell her it was just that I needed a nurse to come show me how to use the parts. The gtube nurse told them that I knew what to do but the problem was that I didn’t have the right parts! yikes! Correct parts to be delivered this afternoon.
Then, called pharmacy. Then, called nephrology. Got iron straightened out. Pharmacy says calcitrol will be in this afternoon.
Then, called SSI. On phone for an hour. Straightened out info I’d already told them. Then, after an hour of really detailed financial information he somehow thought I’d have at my fingertips (cash value of life insurance, value of my car, etc), he tells me that the balance in our bank accounts (the FIRST thing we discussed) alone bumped us above the federal poverty line and disqualified him from SSI payments. OMG. I could have told you we’re well above the poverty line (not because of income, but because of savings), and if he knew that the FIRST thing we discussed ruled out SSI, then why, pray tell, did we bother to continue?
Then spent an hour or two washing feeding tube tubes, drawing up meds, mixing milk with protein powder, etc. for the day. Did Teddy’s first day feeding. Fixed lunch.
THEN the day got much better. Watched a movie with the kids while knitting a preemie hat for The Preemie Project, flowers delivered from Randy, coffee delivered from Betsy, and correct parts delivered from home health. Whoopie!