Nicholas Sumner, DOB 8/5/95
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 back.
Someone needs to be with him at ALL times.
Approximately 60 pounds. Low muscle mass. Wheelchair-bound.
Nick is wearing a Rhythmstar Mobile Cardiac Monitor 7/19/24 – 8/18/24. He has had episodes that may be a seizure or vasovagal reaction, but his neurologist, Dr. Huttinger wants to rule out any heart issues.
Updated 7/14/24 – Hannaford Pharmacy in North Brookfield, MA.
Medications
ALL of his medications go through his feeding tube.
- 5 ml Prednisolone every other day after breakfast – PICTURE– calendar
- 1ml Sirolimus (1mg…REFRIGERATED) at 7 am on an empty stomach.
- 0.9 ml Mycophenolate – PICTURE – at 7am and 6pm.
- 2-1/2 ml Levetiracetam 7am and 7pm – PICTURE
- Testosterone gel 1.62% 20.25 mg. per pump, 2 pump presses once a day (1 to each shoulder area) – PICTURE
Supplements/Other
- Vitamin D – 1,000IU
- One maximum strength Famotadine (AKA Pepcid) 15 minutes before breakfast and 30 minutes before bed.
- B12 – 250mcg every 3rd day.
- 1/32 tsp. kelp granules in his breakfast for the iodine (he eats mostly plants)
Conditions:
- Kidney transplant September 2000 – followed by Dr. Fan at UMASS
- On prednisolone
- Type 2 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
- 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.
- The most up-to-date labs can be found on UMASS system
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).
- No dairy. He gets diarrhea.
- Gluten is suspect.
Other Info
- Doesn’t chew, so he needs his food pureed. Whole foods, plant-based diet, and eggs.
- His abdomen gets distended. There is no blockage, confirmed with a CT scan (UMASS). He has reflux, swallows air, and has intestinal motility issues. Vent the air out of his stomach using his G-tube as often as you can.
Contacts
MOM: Lorna Sumner – If Nick has been in an accident, she was driving.
508-344-0484
Guardians
Chad Steiner
978-660-6673
Donna Cocaine
774-922-3289 cell
508-363-4154 work
Department of Developmental Services
Shanna Jackman
Office Phone: 508-764-0751
Cell: 413-507-1413
Other Contacts
Mom’s boyfriend
Steve Sprague
774-292-0377
Brother
Douglas Sumner
774-200-4059 – Jess will answer
Aunt (lives with Chad, his guardian)
Terri Steiner
978-502-6862
Aunt (lives close to Nick)
Jodi Lane
774-200-3476
Doctors
Dr. Fan – kidney transplant doctor
UMASS University Campus
508-344-1269
Dr. Gelman – PCP
508-347-9240
Dr. Verma – nephrologist
(508)764-3666
Dr. Herscovici – endocrinologist – diabetes, testosterone, replacing him for parathyroid issues
508-347-7585 August 2024 – Received a call from Dr. Herscovici’s office. He is out of the office until further notice. Nick’s appointment next month was cancelled and he was told to contact his PCP for a referral to a new endocrinologist. Dr. Gelman put in a referral to Dr. Szabo (below) and he refilled Nick’s testosterone for him.
Dr. Szabo – new endocrinologist for parathyroid issue, possibly for diabetes and testosterone as well
Johanna A. Pallotta – endocrinologist – primary hyperparathyroidism
(617) 667-9344
Dr. Stagias – gastroenterologist
508-765-1600
Dr. Francis Huttinger – neurologist
508-334-2527 to schedule in Worcester: 508-334-6641
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. Very quiet music helps him a lot. Headphones, too. He needs headphones when he eats, along with music. He will continuously yell until he has them on with music playing.
Nick is on a diet that controls his diabetes without medication. He eats a whole foods, plant based diet and eggs with no liquid/smooth/processed fats other than 1/4 tsp. olive oil per meal. Minced nuts and mashed avocado for fat, foods are chopped fine with a food chopper.
The only thing he drinks is WATER. Never, ever, ever, EVER juice or milk or soda.
He hates warm food and will spit it out. Straight out of the refrigerator or at room temperature only. 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.
He loves music. He wears headphones when he eats or he will yell the entire time. Soothing music is his first choice if he is stressed out. Think spa music…
Thank you.