We went urology and thankfully was told to stop the supression meds...but we had to start cathing 4x a day. Well over a week later, 2 nurses, and 4 adults later...no one has been succesful at being able to cath her. We can get her somewhat calm after 20 mins of screaming and 2 adults holding her down..but for some reason we have no luck getting it in the right spot...we see it yet nothing happens. Today we had 2 nurses here trying and 2 of us holding her down for about 30 mins with not even 1 succesful attempt. It makes me more frusterated but also glad it isn't just me having the problems. Poor Arwen is such a trooper though and is such a good girl through all this madness.
After talking..Richard and I feel that it's best to keep the NG tube out for now since she is drinking WAY more than she was, her bowels are doing great, and she has plenty of wet diapers. And she still had 2 Uti's while being on the ng tube..so to us we didn't see the point of dealing with it if it wasn't serving its full purpose. We are praying she keeps drinking more on her own and we can get her to drink some type of milk.
So for now in between this cathing problem we have empty her bladder as much as we can through "bladder massage"..she doesn't like it but it's easier and faster than cathing..so hey we will take it lol.
The kids and mommy are still having a hard time switching over to daddy's new schedule but we are slowly getting a new routine down. We are easing our way into starting the kids school this week and going full blast next week. It will be nice having a co teacher :)
Thanks for checking in on little miss and we appreciate your prayers and love.
Good luck guys. I hope things start to turn around and life gets a bit easier soon. The head lamp is not a bad idea at all. We have a clamp style desk lamp that we use when we cath Annabelle.
ReplyDeleteNicole
PS - I sent you a note to the address that was on the return address label. I hope it was yours :-)