Tips for order

We had nurses working 2 - 8 hour shifts a day (16 hours total) for 18 months. In my home. We had (and still do) 4 therapists  (and their students - because they always seemed to have a college kid with them) coming to my home 4 days a week. Not to mention the nanny who we hired so there would always be two people with Adam at all times.
I have a husband, a brother who lives with me, another son who is 9, and numerous family members. 
It takes a lot to keep it together in my small cape cod.
Here's what I did. 

• I established a "nurses station" Basically I cleaned out a cabinet and a space of countertop (I had this next to the fridge) Where I placed a basket with papers, pens, and post its. I kept his chart there, also. In that cabinet was where all the things were kept that they needed for their shift. ie: bowls, cups, bottles, and in the drawer (binkies, spoons, etc) I labeled it nurses station and we used the fridge (next to this spot) to post any numbers, contacts, notes to each other and the monthly nurses schedule so we could see who was working and nurses could see open shifts and sign up for them. 

• We have goals that we work on with Adam and rather than have nurses, therapists, family members, nannies, friends, etc. randomly play with Adam, we posted suggested activities on a wipe board that I hung in our old dining room (which we turned into a playroom because its location was ideal and using the basement was not an option with all the equipment we needed on one floor) So, for example it might say: "work on stacking blocks and sing songs and clapping hands" We basically copied some of the therapists weekly goals. We also posted a list of all the signs that Adam was learning. 

• We also have a TON of medical equipment. So we used Adam's closet with an organizer to store it, and many boxes would need to go in our room on the days that the medical supplies would come in from the supplier. (our room would get more normal as the month went on) One of the things that was super useful was to hang the clear closet shoe organizer on the inside of Adam's closet. Then I took a sharpie and labeled each pocket. This way we could find and see his thermometer (vitals every 4 hours), mick-key extensions, meds, trach ties, scissors, tape, pulse ox, and all his syringes were in their own pocket - 30, 60, 10, 5, 3 and 1 ml. everything labeled and easy to find, store, put away and I could see inventory to order more each month.

• In the fridge I used one of the movable door containers for Adam's things (leftover food) and labeled it so Nurses and everyone knew where his things were and not use old food
• In the fridge I gave the nurses a door container and labeled it nurse. This way they had a place to keep their own lunch, drink, snacks and feel okay going in the fridge.
• I hung hooks on the back of Adam's door, just for them and their coat and purse
• I also made sure that they (nurses and nanny) had a lamp (at night), a table just for them in his room, and a chair. We would (at night) provide a portable DVD player and the wireless code in case they wanted to bring their own laptop.
• To keep the dirt at bay, you know he has a hole open in his neck, we made everyone remove shoes (and still do) and have bins by the front and back doors to keep them in. We have hardwood floors and tile, so it's easier than a carpet.
• To help us with learn sign language, we posted posters, bought books, and Phil and I would speak to each other with signs-when we could. 
• It is never easy to stay organized. We kept a family weekly list on the fridge so everyone knew what each day has in store and kept one central location of a planner so that Phil or I could make doctor appointments and know what was up. 
• I also have a binder with all Adam's main info and evals and doctor reports, etc. It's easy to take with you and all the dates are there for meetings. It's organized according to ENT, Feeding, speech, physical therapy, devel. intervention,  other. 
• All medical copays, receipts go in a small storage box. All bills go in a big box. When they fill up. I label them on the outside with the dates and stick them in storage. I will eventually work out paying people. It's hard. We have insurance and get crazy bills, we go through appeals. It's not easy. Don't even get me started on the health care crisis in this country.

Hope this helps anyone out there.