Here is the majority of the agenda for today’s call with IBRF. For the sake of simplicity, I did pare it down a bit for publishing on this blog. Also, I used less medical jargon. As you will see, it is quite detailed. If nothing else, I learned that you must personally manage your (or your loved one’s) health care. It’s just too much for a doctor (with some notable exceptions… that’s right, D-Hink & D-Rod, I’m talking about you!), especially given the inadequacies of the health care system.
With all of you becoming such an integral part of our lives, please let me know if there is anything else that you would ask.
Diviney/IBRF Conference Call
June 13, 2011 (Tuesday) @ 1:45 PM
Ken & Sue Diviney, Dr. DeFina, Dr. Halper, Dr. Gambino, Dr. Zhou, Dr. Fellus, Richard Perricone
Update on Ryan (provided by Sue & Ken Diviney)
- Vitals. Overall, very good.
- Blood Pressure = 105/75
- Body Temperature = 97.6 (under the arm; equates to 98.6 rectal)
- Pulse = 60’s
Frequent heart rate drop in evening (mid 40’s to mid-50’s).
- When we put in bed.
- Usually last several hours.
- Typically accompanied by lower body temperature.
- Nystagmus (eyes jerking rapidly) greatly diminished, but present.
- Eyes abrasion free for over 2 months now.
- Source of past abrasion/scarring identified as simple exposure.
- Current Treatment : Goggles, GenTeal every 2 hours, & Fresh-Kote 3x daily.
- Planning scar tissue surgical removal. Right eye first. Any reason not to?
Pupils. Responsive in both eyes.
- Right Eye = 2 Brisk
- Left Eye = 1 Brisk
- Twitching in lower-left lip.
- Head bobbing.
- Response to “move thumb” not consistent, but seems genuine.
- Right-side has full range (Finger & toes slightly tight)
- Left Side has 90% range (fingers, toes, elbow moderately tight)
- MAG Scan (Electrical Brain Mass). Still on schedule for late-June?
- 3-D Brain Model. Status?
- Any other tests/treatments at Meadowlands (e.g., PET)?
- Next IBRF home visit?
- Evoked Response
- BIS Monitoring
- Dexascan (bone density)
- X-Ray of ulna & Radius recovery in left arm
- Chest x-Ray. Is it worthwhile?
- Blood Work
- Urine Culture
- DVT Doppler Scan (for check for blood clots in arms/legs)
- Baclofen Pump Refill
- Haven’t observed any specific reaction to Provigil
- Estrogen/Progesterone. Any new thoughts?
- Oxoloacetate. Any new thoughts?
- Inosine & NEP1-40. Any new thoughts?
- New medications coming on-board?
Administrative. Need Scripts for:
- Chest x-Ray
- Urine Culture
- DVT Doppler Scan
- Platelet Function Assay
- Holter monitor
- Establish Regular Skype Conference Call Schedule
- Establish Regular Medication Shipment Schedule
- 501(c)(3). Was money from Greg Wells Fundraiser received?