This page is to help you find things in Nick’s house and tell you where you can order it.
Sippy cup and cover
Over the kitchen sink. He’s picky about his sippy cup. He uses a kid’s stainless steel water bottle with a sippy cup cover, no spill valve in it. He bites the lid so the cover needs to be replaced regularly. I buy those on Amazon. You can find the replacements under the TV in the living room, the second drawer down.
Spoons
I still use kid spoons. He has a small mouth. They’re in the table drawer next to the refrigerator.
Scales
There’s a scale for weighing food on the rack next to the wooden post in the kitchen and an extra scale in the Hoosier cabinet across from the refrigerator.
The scale to weigh Nick is under his bureau.
Meals and Snacks
If there are meals and snacks prepared, you’ll find them in the refrigerator, top shelf on the right. I use magnets to label his meals B=breakfast, L=lunch, S=supper. I put the meals together first thing in the morning. Snacks typically aren’t made up ahead of time. The recipe for his afternoon snack is on the side of the refrigerator.
Olive Oil
In the cabinet across from the refrigerator.
Extra Food For Cooking
There’s an extra refrigerator in the foyer and a chest freezer on the back porch.
Washable Bibs
In the kitchen cabinet on the living room wall.
Weighted Pad to Put Over His Arms While Eating
In the basket that’s on the cabinet on the living room wall. It’s black, rolled up.
Wheelchair
In his room or he’s in it :).
Wheelchair Tray
It should be leaning against the cabinet near the door in his room.
Arm Rest Cup Holder
Nick will reach for his cup when he’s thirsty. I typically put his tray on, but if his tray isn’t on, I slide a cup holder on the right arm rest of his wheelchair. The cup holder is hanging on the cart in his room. It’s black.
Headphones
Nick wears headphones often. He always wears them when he’s eating. They should be hanging on his wheelchair or the kitchen table. Backup headphones are hanging in his closet.
Extra Wires for Headphones
On the rack hanging inside Nick’s closet door.
Phone
It has a pink case on it. It may be in several places: In the little organizer hanging on the back of Nick’s wheelchair, on the kitchen table, on the cart next to his bed, on top of the big cabinet in his room, on the floor in front of his bureau – this is where it gets charged. You might also find it wedged underneath the headrest of his wheelchair.
Speaker
There’s a portable Bluetooth speaker on the back of the stove. The charger for it is in the cabinet across from the refrigerator. The label on the wire says Beats Headphones.
Medications and Supplements
Medications are filled at Hannaford Pharmacy in town. 508-867-4891
Sirolimus: in the refrigerator door, far right. The syringe for it is in the white case right next to it.
All the rest: cabinet in the kitchen, on the wall near the living room.
Surplus supplements: Nicks’s closet, on the rack hanging on the inside of the door.
Glucose Meter
Cabinet in the kitchen, on the living room wall. It has his name on it.
Continuous Glucose Monitor
If he’s wearing his CGM, it’s in the bag hanging on the back of his wheelchair, on his tray, or in front of the living room TV. If he’s not wearing it, it’s in the cabinet in the kitchen, on the living room wall. It has his name on it.
Feeding Tube Supplies
Cabinet in the kitchen, on the wall near the living room. Opened Y port extension tubes are in the round baskets. The bottom basket has dirty tubes, top basket has clean tubes. There are extras in that cabinet drawer, under his bed, and in a box on the floor in his closet. The same goes for the large syringes that attach to the extension tubes.
These are paid for by his insurance once a month. The prescription and letter of medical necessity come from his gastroenterologist. He gets:
- 1 Mic-Key button (this is what is in him – look at his stomach) every 3 months. The size is 18french, 3cm (it’s written right on the button).
- 6 each of the 24″ Y port extension tubes
- 31 syringes (choice of size, I usually get 60ml)
- 31 feeding bags – which get modified to be used for venting the air out of his stomach all night. They can also be used for extra fluids.
I order extra syringes and extension sets from Carewell. Be careful of the extension sets. They tend to leak where the silicone tube meets the hard plastic part that attaches to his Mic-Key button. I test the extension set every morning to make sure it’s not leaking.
Diapers, Booster Pads, Blue Disposable Bed Pads
Regular Day Diapers: The white diapers don’t fit him right. Use the blue/green diapers. They are in the big cabinet in Nick’s room. They are also in the brown organizer hanging on the metal cart next to his bed. Surplus is upstairs in the front bedroom closet. They’re also in the front room, to the right of the fireplace, and in the closet to the right of the fireplace.
Washable bed pads are in the big cabinet in his room, and there are lots of extras in the small bedroom upstairs, on the metal rack.
Order all of these supplies once a month from AllCare Medical along with reusable bed pads and gloves. It doesn’t matter if he has plenty on hand. Order them anyhow and store the extra. There will come a day when there’s an issue with getting supplies.
Full list of supplies for when you call it in. You can leave a message on their voicemail:
- Diapers
- Booster pads
- Chux
- Reusable bed pads (if needed – he probably doesn’t!!! Don’t order extra.)
- Gloves
See the Contacts page for more information. Paid for by insurance. Prescription and letter of medical necessity from this Primary Care doctor yearly.
Night Diapers: I order nice diapers and booster pads for Nick to wear at night to keep leaks to a minimum. You will find night diapers already made up in his bureau. To the diaper, add one of the doubled up pads (also in his bureau) where it will soak up the most urine. Surplus is upstairs in the extra bedroom. Please only use these diapers and liners at night or if he won’t be changed for a while. For instance, he’ll be out on a trip where there is no place to change him. You can order these on Amazon or through Carewell.
Reusable Bed Pads
In the large cabinet in Nick’s room. Extras are upstairs on the rack in the small bedroom. Paid for by insurance. Prescription and letter of medical necessity from this Primary Care doctor.
Disposable Gloves
In the large cabinet in Nick’s room. Order them once a month from AllCare Medical. Paid for by insurance. Prescription and letter of medical necessity from this Primary Care doctor.
Syringes
In the kitchen cabinet near the living room. Surplus is on the rack inside Nick’s closet door and in a box on the floor in his closet. He gets 31 very large syringes (60 ml) per month. I also order extra from Carewell.
For meds, he needs 1ml, 5ml and 10ml. You can get some free from the pharmacy, you just need to ask for them when a medication is picked up. They don’t give you many though. I reuse the medication syringes.
Blood Pressure
Nick has one of those automatic blood pressure machines. Look on the little narrow, table next to the couch (on the side) for the machine. The small cuff is on the rack hanging on his closet door.
Pulse Oximeter
On the cart next to Nick’s bed.
Forehead Thermometer
On the cart next to Nick’s bed.
Batteries
Bureau in the foyer, bottom drawer.
Online Medical Records
I won’t post the sign-in information here. There is an index card in the kitchen cabinet near the living room, inside the plastic bin.
Generator
There’s a generator in the barn. It gets set up outside the barn, away from the house. The outlet to plug it in is on the side of the house, near the barn door. The instructions on how to use the generator, including how to shut down the electrical panels are in a maroon-colored binder located inside the barn, on the left, on a little table with oil on it. The binder also has information on which circuits to turn on to run things in the house. Not all of them get switched back on. There are two electrical panels. One in the basement of the house and one in the barn, right next to the door. Only one circuit gets flipped back on in the barn. It runs the chest freezer on the back porch.