Jacob got 24/7 for one month (was never staffed), then it slowly has cut down. We have 16 hrs per day now, we use 12 hrs. I like having a nurse to come in at 7 at night, help with trach care, treatments, etc, then monitor the vent while I sleep. I don't work outside the home, so I stopped having regular day nurses about 10 mths after comming home. Although we have gone through some duds, I have some really good nurses now and am completely staffed. My son is two now and off of the vent while awake. Be prepared to train all of your nurses. As a pediatric nurse, I can tell you that you don't learn all of this in school! You will be the expert. Good luck.
Miracles Do Happen!!!
Jacob's mom, 3 yr old with DiGeorge/VeloCardioFacial Synd., TOF with APV, trached 9-11-01, G-button, LTV 950 for 2 1/2 years. Decannulated April 12, 2004!!!