Nicholas Sumner, DOB 8/5/95
PREDNISONE DEPENDENT – Nick has been on prednisone since September of 2000.
Safety Issue! Nick will fall out of a hospital bed, even with the sides up!
He has severe osteoporosis. He can roll over to the sides and scoot backwards & sidewards!
He can fall off a gurney or hospital bed, even with the sides up. Someone needs to be with him at ALL times.
Approximately 67 pounds. Low muscle mass. Wheelchair-bound. Non-verbal.
The most up-to-date information can be found on myChart
Medications & Supplements
Updated 3/18/26 – Hannaford Pharmacy in North Brookfield, MA and UMASS Pharmacy for transplant meds.
ALL of his oral medications go through his feeding tube except for Calcitriol which goes in his food.
- Prednisolone every other day after breakfast – 5 ml – needs food in his stomach (can’t understand the dosage on the bottle, it’s written out weirdly). – calendar
- Sirolimus (1mg…REFRIGERATED) – 1ml at 5 am on an empty stomach. He gets this on an empty stomach. His levels can be thrown off if you change this.
- Mycophenolate – 0.9 ml at 5am and 5:30pm.
- Levetiracetam – 2-1/2 ml 5am and 5:30pm
- Famotadine – 20mg 15 minutes before breakfast and 30 minutes before bed.
Vitamin D – 2,000 IU– no longer takes, replaced by Calcitriol- Calcitriol – 0.25 mcg twice per week. Bottle says 3x, doing 2x per Dr. Verma – watch level per Dr. Szabo
- Testosterone gel 1.62% 20.25 mg. per pump, 2 pump presses once a day (1 to each shoulder area)
- Miralax 17g after supper
- Heme Iron – 10.5mg after breakfast, 2 hours minimum after mycophenolate
Allergies
- Propulsid – threw up
- Prograf – makes him itch, severely
- Not an allergy, but avoid Ibuprofen (kidney transplant)
- Cyclosporine – was on it for years. Gum growth issue, not a true allergy. Switched to Sirolimus (Rapamune).
- Lactose – not an allergy. Latose free milk only! Gets diarrhea.
- Gluten is suspect.
Conditions:
- Kidney transplant September 2000
- On prednisolone since September 2000
- Diabetic – well controlled with whole foods, plant-based diet
- Osteoporosis
- Low testosterone – on replacement therapy
- Hyperparathyroidism
- Reflux
- Abdominal distension (air) – confirmed in past on CT scan @UMASS – not caused by a blockage – he swallows air – needs to be vented via G-tube
- G-tube for meds and extra fluids as needed
- Cerebral palsy
- Severe cognitive impairment
- Nonverbal
- Nonambulatory and needs his custom wheelchair when not in bed
- Cortical vision impairment
- Unable to care for himself. Relies on others for everything, except he can hold his sippy cup.
Contacts
MOM FIRST: Lorna Sumner
508-344-0484
Guardians
Chad Steiner
978-660-6673
Donna Cocaine
774-922-3289 cell
508-363-4154 work
Other Contacts
Mom’s boyfriend
Steve Sprague
774-292-0377
Brother
Doug
774-200-4059 – Jess will answer
Aunt
Jodi
774-200-3476
IMPORTANT: Nick can roll to the sides and fall out of a hospital bed, even with the sides up. He can sit up, scoot back and fall where there is no railing or off the top of the bed. Even if the bed is inclined a bit. He’s not safe in that bed alone.
More Info
In a stressful situation, Nick may yell a lot. He may also completely shut down and try to sleep, and may even moan and groan at bed time, which can make it difficult to know if something is wrong with him. He has sensory issues. White noise helps him a lot. Headphones, too. He wears headphones when he’s awake.
PUREED FOOD. Nick is on a diet that controls his diabetes without medication. He eats a whole foods lacto-ovo vegetarian diet (lactose free milk). Minced nuts (no almonds – prone to kidney stones), avocado oil and mashed avocado for fat, foods are chopped fine with a food chopper.
Nick’s nutrition needs:
~1500 calories, ~50-60 g protein, potassium ~2,000 mg, low sodium, calcium 800 min up to 1,200 mg/day, phos ~1000 mg, fiber: ~20 g, aim for negative PRAL.
The only thing he drinks is WATER, calcium fortified coconut milk or oat milk and LACTOSE FREE MILK. No almond milk – he’s prone to kidney stones.
He hates warm food and will spit it out. He drinks from a kid’s water bottle with a sippy cup cover, with a no-leak valve in it. I understand that you’ll have to make do with the sippy cup.
Please give him a facecloth to fiddle with. He’ll just use his shirt or whatever cloth is in reach if you don’t.