It has been a crazy week. James has seen his cardiologist, occupational therapist, developmental therapist, and in-home nurse already. James is doing well. The cardiologist has released James and doesn't need to see him again unless his pediatrician recommends it down the road. The therapists keep giving us ideas to work with James to help him "catch-up" in his development...apparently 72 days in a NICU bed can set you back. Most of his slow progress is due to the fact that he can't eat and his therapists expect him to catch-up after corrective surgery. For now we just keep doing exercises with him and trying to convince him that his thumb and fingers can be really fun toys!
Currently James gets his food through a Mic-Key button in his belly. Of course he had no problems with any of the buttons he had in the hospital, but now is a different story. Today I had to put his third button in (I'm an RN now too...not really). This is the third button in 2 weeks and the buttons are supposed to last for 3 months. The last 2 have had holes in the balloon that holds them in place. I have been lucky enough to discover the broken balloons before the problem caused a trip to the ER both times. But each time this happens, I have to call the medical supplier and order a new button because you always have to have a back-up. Now that I've ordered my 4th button in 2 weeks, they think I'm running some type of scam. Apparently these buttons are quite expensive. Seriously? Maybe there's a black market out there for these things??? So after discovering his button was loose today, realizing the balloon was busted again, and replacing the button (all while having a minor panic attack), I called to order a new back-up only to have them accuse me of lying and possibly trying to commit insurance fraud. Ugh! They're putting a new one in the mail, but I should expect a call from their nurse (because we don't see enough as it is) and probably my insurance company. Oh Great! I need a vacation!
I'm off to make Cheeseburger Macaroni...don't tell Dave I'm using ground turkey instead of hamburger! It's his own fault really. Last week he mentioned that we shouldn't have red meat so much...apparently it's bad for us :)
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That really stinks about the buttons! As if you don't have enough to deal with, now you have to deal with all of those phone calls too. I'm glad to hear that you are working with an OT, though! I've been wondering if someone has been helping you with James' oral motor skills. I went to a feeding conference in October and I thought about James the whole time. I hope he keeps making good progress, and I hope his buttons start to last longer!
ReplyDeleteP.S. I loved New Moon, too!!