Being with a loved one at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Being with a loved one at Stanford

Postby Loobie » Mon Jul 20, 2009 6:41 pm

From Loobie's Mom...

Wow, what an amazing, heart-rending, hopeful, informative, exhausting week. I don't even know where to begin! I'll start with how to be of help. Once we got to Lew's first appt. (we were so lucky to have a friend who knew where our destination was!)' I had some time while he was going through his initial tests. I remember someone saying how many long halls there were to navigate. So I took this time to run through the days itinerary and found all the places we needed to be (admitting, blood draw lab, etc.) and made sure I knew just where we were going. When we were with Dr. Dake, I listened intently to make sure I could be of help if Lew forgot anything, which he did not. Smart kid I have! The next day would have been perfect if I could have stuffed my nerves, but that was impossible. The best thing to do is just stay as calm on the outside as you can. I did not want my fears to in any way spill into Lew. I even recommend learning the parking garage if you have to use it. (Lew, you understand this one, right? :roll: It is also helpful to know that surgery does not start for about 2 hours after pre-op. Nothing to do while in post op but wait. After a room is assigned, just see what can be of help---cold compresses on forehead, available water, etc. One thing I do recommend is to make a chart for all the meds. It is pretty easy to get confused on timing. Some are every 6 hrs, some am, some pm. Anyway, having it in writing all in one place really helps.
Lew was a trooper. He may say that he is a pain wuss, but he rarely complained and really took everything very well. Even that long plane ride home.
If you are the caretaker making this trip with your loved one and have any questions or need any support, just holler! Thank you all for supporting my son with such loving and concerned messages. You are the greatest.
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Postby cheerleader » Mon Jul 20, 2009 6:56 pm

Nell...
You are the greatest. Thanks for posting and offering advice to caregivers.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Mon Jul 20, 2009 7:22 pm

Cold Compresses? Boy that is a luxury treatment buy then I was #4 anf we know there must be a learning curve
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Postby mrhodes40 » Tue Jul 21, 2009 8:13 am

Good thoughts Nell, thanks!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Jamie » Tue Jul 21, 2009 8:35 am

Also the mutlicoloured hi-tech status board is wildly inaccurate.

Mel had been in post op for an hour before it updated leading me to believe there had been problems.
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