Angelia,

Monday morning...call what ever doctor's office you have the best repore with and ask them to prescribe an in-network home health company. (I know this can happen as I was getting the run-around from the PCP's office and their home health co. so we ask the MO's office for help.) Get the name of that company and call them yourself. That will get the ball rolling...once you have an in-network provider...they will take over as it is new business for them. Does your hubby do any of this kind of thing...he needs to be helping you thru all of this???????

You need someone who is used to seeing these PEG's take a look and make sure everything is OK (like a visiting nurse.) You also need supplies and supplements...all of this available from a HH Company that will come out to see you, deliver to your door and give you instructions, etc. The dieticians at the RO's office, in my experience, are not helpful with this...it doesn't seem to be their focus ( I felt more informed than she was.)

Its sounds as if you are having to run the show and be the patient. That is very hard and will get harder during your treatment. You definitely need someone to be the "nurse from hell" (tribute to JAM for that phrase) on these things...if not, you sometimes get lost in the crowd. I determined very early on that "if it's to be, it's up to me" regarding getting Bill the optimal care, etc. Your hubby is going to have to step up to the plate on some of this or you perhaps need to ask for help from family or friends.

Trying not to sound harsh but knowing that you need help and support,

Deb