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?
The Colangelis says
Ryan’s vitals look really good. Good to hear he’s working to respond and I am believing it’s genuine. We continue our prayers for God to heal him.
It’s so great to read the constructive input that you all have for Ken!
Thanks, it’s because we all care more than words can say.
Amen to that Dianne. If only we could do more…
Way Too Tired says
Are any of those docs pharmacists? Given the intricate meds management you need to do, you might want a pharmacist on the team.
Agree, I compounding pharmacist would be perfect!
Gail Doyle says
Ken Looks like you covered all bases with such an involved agenda…And hope any questions,are answered to your satisfaction .We certainly do have to take over all health issues in such a day that Drs seem to be allowed 10-15 minutes with each patient :(,if that )Will be thinking and praying all goes well. SHSP. Gail
Hi Ken! Well, as always it looks like you’ve got the whole gamut of issues covered. Out of frustration, I began doing some searches, knowing the odds are high that you will have already seen/read/know about these articles. But, on the off chance you’ve haven’t seen these, I’ll put them here:
Praying for a positive dialogue with the IBRF and an aggressive plan to help Ryan on his road to recovery!!
Love & prayers, Paula
Unbelievable! This is an amazing agenda. I’m sure that you & Sue take good notes during these conference calls. Are you allowed to record the calls in case you missed anything? I would think that you could be so into listening, you could forget to take notes. That happens to me sometimes.
I wish you all a great day. Try to stick your head outdoors for a couple of minutes. It’s simply gorgeous out there. We don’t get too many days like this in our area — not too hot or cool, low humidity — reminds me of San Diego!
Big hugs to Ryan! Love you all — SHSP, NGA!
Yes. Since we are rarely together for these calls, Sue & I independently take notes and record the calls. Because, you’re right, we are intent on listening. Following the call we each prepare our own minutes and later merge these. We send those minutes to all participants. It’s just like a business conference call, in many respects.