JFGH keeps complete information about Chris's medical needs and treatment. Check with his primary caregiver - Laye - at the home, or the house manager.
Primary Care, GP, internist:
Dr. Jerome Herbers
Cameron Medical Group
8700 Georgia Avenue
Silver Spring, MD 20910
301-585-6049
We changed Chris's PCP in April 2016 because we needed the resources of a group, in case a single doctor is not available, and an office that is open five days a week. Dr. Herbers seems an excellent fit.
With regular visits from the visiting nurse, Chris sees Dr. Herbers only for special problems - not at all in the past several years.
In the summer of 2018 he found a nursing service that could visit Chris at home. That has cut down dramatically on the number of times that Chris has to be taken to an appointment.
Visiting Nurse
Mary Blanken
Boly Cross Health
blankm@holycrosshealth.org
301-754-7965
Dr. Herbers worried that Chris was having to see too many different doctors, always involving a trip in the house van. So he found a visiting nurse who now sees Chris every three months. The nurse is now monitoring and replacing Chris's stomach tube in addition to giving his annual physical and checking on him regularly. Occasionally there is a problem with replacing the tube and Chris has to go to an ER, so sometimes the staff takes him to his G.I. for tube replacement. In the spring of 2022 the nurse said she was about to retire, and the staff began looking for a new one.
Neurologist
Dr. Gregory Mathews
1400 Forest Glen Road
Suite 225
Silver Spring, MD 20910
301-456-5810
gregorymathewsmd@gmail.com
He diagnosed the seizures in Holy Cross hospital in January 2015. He still sees Chris about twice a year, mainly monitoring for seizures and the proper level of his seizure medication.
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Neurosurgeon
Dr. Jeff Jacobson
Department of Neurosurgery
Johns Hopkins School of Medicine
4927 Auburn Avenue
Bethesda, MD
301-896-6069
Was a resident at Childrens Hospital for Chris’s first surgery in 1981.
Conducted Chris’s second major brain surgery, at GW, around 1990
Conducted less serious surgery in 2006 – removing part of the plastic plate that made up Chris’s ‘skull’ and had come loose – at Suburban Hospital.
Conducted gammaknife procedure in spring 2010.
In late 2009, when Chris was having more trouble speaking, chewing and walking, he found that the tumor had returned. No one wanted to put Chris under the knife again, so Dr. Jacobson conducted a gammaknife procedure in spring 2010. It seemed to be successful. But Chris soon began getting worse - especially in chewing, talking and walking. In late 2010 we checked him into Washington Hospital Center, and Dr. Jacobson oversaw the extensive work on him and identified the serious brain infection that may have caused much of it. He saw Chris at follow-up sessions in July 2012 and October 2014. We haven't been back to him since then, because any additional surgeries or radiation is out of the question, but he would always be available for advice and consultation.
Audiologist
Dr. Robert Baumgardner (ear cleaning)
1400 Forest Glen Road
Suite 315
Silver Spring, MD 20910
(The Physicians Office next to Holy Cross Hospital, off Georgia Avenue)
301-754-2290
For years Chris saw Dr. Robert Baumgardner to have his ears dewaxed, most recently in June 2018. Now that the nurse is cleaning out Chris's ears when she visits every few months, we are not scheduling more appointments with him.
Gastroenterologist
Dr. Kempanna Sudhakar
Adventist Healthcare
7610 Carroll Ave.
Suite 230
Takoma Park, MD 20912
301-891-2303
For years Chris saw a GI doctor every few months to check on his stomach tube. It can come loose and require a trip to an ER to have it replaced. Then the nurse began replacing the tube, but occasionally had problems. Chris began seeing Dr. Sudhakar again for tube replacement in 2022.
Foot Doctor
Dr. Adam Spector
Foot and Ankle Associates
2730 University Blvd. W
Wheaton, MD 20902
Or
15020 Shady Grove Rd.
Rockville, MD 20850
301-949-3668
For decades Chris needed special shoes with a brace, and he had a hammertoe problem that often made it difficult to get his right shoe on. Now that Chris cannot walk, he doesn't need the special shoes, or any shoes at all. Some form of house shoe can protect his toes from getting bumped, as he is pushed around in his chair. Dr. Spector is still important to monitor his right foot and keep its toenails trimmed.
He does a general examination every 4-5 months, mainly checking right foot; toenail trimming, etc. He has also helped with cuts on Chris's toes, pressure points and swelling. Last visit: spring 2018.
Dentist
University of Maryland Dental School
650 W. Baltimore St.
Baltimore, MD 21201
410-706-7039
After Chris could no longer open his mouth, he had to transfer from his long-term dentist in Rockville to a specialist, who had to sedate him and hold his mouth open with a block to clean his teeth. After a few visits, that dentist said he couldn't treat Chris any longer - largely because he didn't have a medical nurse on staff and it was very difficult to find Chris's veins to give him the sedative. So after quite a bit of looking around, we found the University of Maryland Dental School. Its Geriatric and Special Needs section sees Chris every six months or so, with different students and teachers cleaning his teeth and checking for cavities, etc. Even though he doesn't take any food or drink by mouth, it is very important to keep his mouth clean, to avoid bacteria in the stomach.
Eye Doctor
Dr. Theodore Gancayco
Washington Eye Specialists
1160 Varnum St. NE
Washington, DC 20017
202-635-1017
Now that he can't speak, or respond in any way, a normal eye test would not work. We learned that some eye doctors can "read" the imperfections in eyes with a machine, like the one that tests for cataracts. In January 2014 Chris went to Washington Eye Specialists in Washington, who managed to develop the prescription. They also take medicare. The exams are fairly crude, but they can find any major changes as well as look for related symptoms. We aren't sure of their value, and Chris has not seem the eye doctor during the pandemic.
Medication
Chris takes all his meds with his nourishment through the stomach tube. His meds are managed by his caregivers at the group home.
The prescriptions are filled by ALCO Pharmacy, which sends packaged supplies directly to the group home. They must be renewed by the visiting nurse or Dr. Mathews. We receive a monthly invoice for the amount not paid by Medicare. The group home keeps an up-to-date list of all meds. They administer them with his morning and evening feedings.
Wheelchair
Chris has a customized wheelchair, made before his 2015 setbacks, that was funded by Medicaid. Even though we had it remodeled in 2016, it doesn't meet his current needs. We began the process of getting Chris fitted for a new chair just before the coronavirus crisis. We'll get back to that afterward. For now, the chair is maintained by New Motion, which acquired its original supplier, Med Inc.
Julie
New Motion
410-298-4555
Transporting Chris
His legs do not bear any weight, so it is very difficult to move Chris to and from his bed, wheelchair, a car, etc. His caregivers know how to do it, but it's hard - and dangerous - for others to try. At his home he has a special mechanical lift above his bed to help move him to and from his chair.
JFGH has a van that they use to transport him. If for some reason it isn't available, Washington has a Metro Access service, which provides subsidized wheelchair van rides. They must often be booked at least 24 hours in advance. His Metro Access card is in his wallet.
MEDICAL INSURANCE INFORMATION
As of December 1, 2011, Chris began receiving help from Medicare. He has Part A and Part B. He is also signed up for a prescription program.
He is still covered by Medicaid as a back-up. He has a 'Maryland Care Programs' card.
He has both the Medicare and Medicaid cards in his wallet (which is usually in his bedroom). Also his Maryland photo-ID.
Updated 4/15/2022
