Grandson coming home!!

June 13, 2007

My grandson is 6 weeks old, he has CHARGE and is scheduled to be

discharged home next week. He has a trach (non- vented)and g-tube

(mostly continuous feedings via a pump. He has been approved for

nursing through the waiver program and today mom and I will start

calling home nursing agencies from the list they provided us. Does

anyone have any advice as to how to proceed from here. We have to

use a RN or LVN for the program to pay and they don't start paying

until we have a nurseready to start. Meanwhile Tyler will come home

without nursing, using famiuly and friends to help mom and dad get

sleep. Mom is still off work for now and dad is taking a couple of

weeks off when Tyler is home. We still do not know the fullimpact of

what type of supervision Tyler is going to need, we are assuming

someone needs to be at his side constantly.

Equipment at the home will be a humidification mist machine for the

trach, suction, apnea and feeding pump. We have purchased a very

portable small pulse oximeter hoping this will give mom and dad more

mobility.

What are we in for?? finding nursing, abilitiy to go camping,

travel, and daily outings to visit friends and family ( mom and dad

have a RV with generator). We are a very active family especially

during the warm months of the year.

June 13, 2007

First congratulations on such a great milestone. Coming home is always a great

thing and a huge adjustment. Home nursing is a great thing but sometimes it can

be frustrating. With trach your grandson will need 24 hour supervision. I think

once he is home you will be able to determine how mobile he can be. With a

generator you should be ok to go camping and such. Remember with nursing trust

your instincts if you don't feel comfortable with a nurse ask to not have them

return. I hope this helps.

a mom to 9yr CHARGEr and Quintin 6yr seizure prone

eberrn eberrn@...> wrote: My grandson

is 6 weeks old, he has CHARGE and is scheduled to be