Ardyth, now that they are finally funding you, you may want to ask / post people's experiences of things you wish you knew. I'm sure you think you do, but coming home from the hospital, and losing that security blanket can be quite intimidating. Here's some things I would do:
1. Get a list of equipment/supplies you will be authorized. Double check that list with experienced parents to ensure the doctor didn't leave anything off.
2. Interview the nurses, and listen to your gut when accepting a nurse coming into your home.
3. Come up with hours you want to have covered, if you aren't getting 24 hours (which most people get 16 hours or less). Make sure this works with you and your husband.
4. Come up with a durable medical supply company with a good reputation. Ask around - some are good, some bad.
5. Come up with a training plan - believe it or not YOU will be the most experienced person. Don't feel intimidated by the title "nurse" - you WILL know more than anyone who they send to your home. It is your responsibility to make sure they're trained beyond what the agency trains. You know your child best.
6. Inform the fire stations and emergency medical personnel of where you live and the situation with Shealea. We made a poster with Michael's stats, a map, exactly where the equipment and our son is in the house (in case a rescue is needed - seconds count!
7. Contact the electric company, gas company, phone company with your situation so that you get on a priority list for emergency repair.
8. Buy a backup electric generator if you can, or be ready to transport to the hospital if the electricity goes out - the batteries only last 6-8 hours!
9. Get a cell phone so if the phone goes out you can call the rescue squad if you need to.
Maybe others have ideas for you, too! I'm so happy for you guys! Hugs, Sue