November 30, 2007

8:30 PM

Hi Everyone,

            Thanks again for all the messages and contacts.  Our network is growing and becoming more effective every day.  Keep it up!  Following is an update from Brian and Mo on this past week.

Health Issues:

Brian is feeling a bit better although quite exhausted.  In general, his color is better and thankfully, the swelling in his legs have gone down some.  Mo says that his legs are “a lot better”!  Bri is also requiring less pain medication than previously so he is feeling less fuzzy in the head as well as less nauseated.  For all of this, please offer thanks to God and to Our Lady for this bit of grace. 

As you know, Bri and Mo saw the primary care doctor and the GI specialist on Monday.  They returned today for a follow up.  Brian had to go to the hospital for the planned paracentesis (the “tap” to pull fluid from the abdominal cavity).  It was a long day and very tiring because the procedure requires that Brian be admitted to the hospital and then discharged home again.  The wheels of red tape move slowly – need I say more?  After much slogging in the rain and waiting to be processed, they pulled another 5 liters of fluid off, easing the pain in the abdomen somewhat and relieving pressure that is exerted on the kidneys and liver.  The doctor issued a standing order for Bri to have this procedure done “prn” (as needed).  That will help expedite the process in the future.  Brian and Mo started at the doctors at 8:45 this morning and didn’t get home until after 3:00.  Needless to say, it was a very long and tiring day.

The referral to Loma Linda is still pending authorization at the insurance company as is the auth for the liver biopsy.  We need to continue to pray for a speedy turn around.  Lab work is planned for Monday to check up on kidney function and other baseline data. 

 Some of you have asked about Brian’s blood type. He is A+. 

Maureen is pretty wiped out as well.  She hopes to remain off work for a couple more days.  She reports that she is feeling a bit better also.  A sore throat threatens off and on but never really blossoms.  She will have an endoscopy after Christmas to follow up on the status of Celiac Disease and an ulcer in the esophagus.  (The tube-like structure that delivers food from the mouth to the stomach).

Other info:

            Brian called last night to say how excited he is about our messages and our networking.  He has heard from old and new friends alike, some as far away as New York and New Jersey.  Maureen reads our broadcast and other emails to him and he is very moved by it all.  Brian especially loves the messages on the caringbridge web page.  He told me that if we had not talked when we did, “it would have been too late” for him to reconnect with all the people that he loves.  Brian says he has another long list of friends whom he has lost contact with and wants to make connections with.  When I get his latest list I’ll send it out so we can go through our contacts.   I asked Brian if he was okay with all that I have relayed to everyone.   He responded with, “Oh yes!  Tell them everything”! 

Daniel, Mo and Brian are at home while Drew is in Arizona with a friend for a short visit.  Brian plans to spend time with his Mom and brothers tomorrow.  Brian’s (and Mo’s) roommate of years ago, and Daniels namesake, Dan Ward, is coming in from Northern Ca. on Monday for a much needed visit.   Maureen says to be sure to thank everyone for being sensitive to the fact that they just don’t have the energy for long visits.  They are so touched that people come all the way to Temecula for short visits.   Thanks for understanding.   We connected with Bob Byrne and Bobby Jr. today.  Pat Hauducoeur found Cal and Sylvia Stephens.  (We had many a St. Patrick’s Day “hoot” (short for hootenanny) with Cal and Sylvia. 

Plans and Misc. Issues:

· Mike and Leandra Carroll are still working on a web site that will allow us to post messages, pictures, video etc. in the hopes of achieving more efficient communication and sharing.  Stay tuned for further information.  The caringbridge site is all we have for now so feel free to post messages there.  Brian and Mo have figured out how to make journal entries, etc. so they should be posting something soon.  When the permanent site is available we will have a lot more freedom to post more items.

· We’ve had 4 volunteers for helping with meal preparation.  We are pulling together recipes and a labeling system for Na+ and protein grams, etc. and will get cooking in the next couple of days. 

· Ruby Simpson and her family passed along a line on the chief of the transplant service at Stanford U if the need to go out of the area arises.

· Brian’s brother Kevin has been located in the upper desert.  Thanks to all who helped to accomplish this.

· Joe Roles from OLA has come forward to help sell Brian’s ’66 Ford pickup.  Joe is a magazine publisher whose division has two classic truck magazines.  What a blessing that Joe found his way to our network! 

· Jim Stoneman (our resident attorney buddy, organist and co-founder of the OLA music program along with Brian over 30 years ago) is looking into any benefits that may be available to Brian and Maureen such as Social Security Disability.  This is not Jim’s area of legal practice so if anyone is especially savvy about these issues as they relate to folks with end stage illness, drop Jim a message. 

· Mike and Leandra are working with Fr. Tom to coordinate efforts at OLA to increase our network participants.   This will be especially important in the days ahead should we need to build a blood bank, etc. 

· Don and Linda-Marie Sundstrom (Rancho Cucamonga) have graciously offered their home recording studio if any of the musical folks in our company want to record some music for Brian.  I hope that Mike Carroll, Jeff Brown, Roger and Janet Samuels, Pat Naish and others with special talent in this area can work something out.  Don is a professional sound engineer who maintains a studio at home for fun and at-home working hours.   (Some of you will remember Linda-Marie when her name was Pipitone.  She and her friend Elliot played percussion with Brian back in the 1980’s).

What can we do now?

· As always, continue to pray and fast and seek God’s mercy for Brian and Maureen and the boys.  Please continue to pray that it will be determined that Brian is a candidate for a liver transplant and that we will have a successful search for a suitable donor.

· Check your email for updates and other information.

· Stay close, cherish and support one another. 

· Keep the cards, letters and web messages coming.  

· Search for low salt - no salt, low protein and gluten free ideas for appetizing dishes.  Brian is still eating very little.  He reminded me last night that he “LOVES” iceberg lettuce and cabbage!  (There’s too much liquid in lettuce to have much of it but we need to work on some tasty salt-free salad dressing ideas.  Any encouragement/incentive to get more nutrient is appreciated).

· Drop an email to Jim Stoneman if you have any info re: paid family medical leave, SDI benefits and family caregiver support benefits. 

· We are searching for contact information for Larry and Cyndy Pabis.  I think they live in Upland.  Please connect them to the network if you have their contact info. 

I can’t think of anything else right now.  Thanks again for all that you are doing. 

            With thanks to God and in the love of Brian.