Getwellbean

Kathleen had a positive visit from a representative from Apria Health Care. The rep was very helpful in correcting some of perennial supply problems Kathleen has had through the Kaiser DME.

The Davey's emailed and called Neurohealing today after this press release came out suggesting an upcoming study to help minimally consciouss or persistent vegetative state patients.

Kathleen received another visit from the nurse today who was very kind and thorough. Kathleen's mild fever has receded, her phlegm is clear and though she is coughing quite a bit she seems on the mend.

Kathleen had a mild fever today after throwing up again in the evening. In the afternoon, Bean received a visit from a Kaiser nurse who made some assessments and will return tomorrow.

Late in the evening Kathleen coughed up blood. Mike called Kaiser and asked for a nurse to come out and check on Kathleen's g-tube and her breathing in the morning. The family still waits due to "lack of nurses."

Success in heart attack patient using stem cells.

Kathleen had a good day with many guests coming to the house to visit with her. She appeared to enjoy the evening and the family toasted to Beaner when her sister Megan announced that she had won the bid on a condo. It was a good evening until Kathleen again threw up during dinner. Kathleen's more frequent aspirations are of significant concern to the family.

Kathleen threw up in the morning but was able to recover just in time for a noon visit to the dentist. Oh joy. Actually, the visit went well with Kathleen being much more cooperative. She opened her mouth to a certain extent and was able to get an extensive cleaning. It was generally a positive experience and very encouraging.

Kathleen fought to stay awake in the morning as the girls headed off to their first day of school, but fell asleep right before this picture was taken. During the afternoon she had significant and very different eye movement.

Kathleen was having a good day today. Though she was a bit tight from two therapy sessions, she was making a significant range of noises in the early evening. Later in the evening, however, she had significant phlegm and her blood oxygen level once again declined. Bean had significant trouble sleeping from both her own difficulty breathing and the kitten playing with her toes until he finally settled down to sleep with her.

The girls got up early with their mom this morning and took a shower with her. The caregiver had to put on "sunglasses" on so they couldn't see the girls.

Kathleen has shown incremental and fleeting signs of being more alert recently.

Studies are being conducted on global ischemic brain injury and the Davey's are checking to see if Kathleen could benefit from and take part in such a study.

Samie always wanted Mommy to "have an older brother" which is still probably impossible, but I wonder if this has any application to Bean?

Kathleen was relaxed and sleepy all day. She had an acupuncture session and was so sleepy by days end that she slept through six kids screaming in her room while watching the Borrowers.

The new kitten (Abe Lincoln) loves to sleep ON Kathleen's head during the daytime when she is not up in the chair. He is a total lap cat and already seems to have taken to Bean.

The Davey family has begun setting up a tax free organization to contribute to research for global brain repair and to individuals suffering from this affliction who need help purchasing medical equipment.

Kathleen struggled Tuesday night. She threw up and had significant secretions all night long needing frequent suctions. Luckily, the kids slept well and woke everyone up bright and early after the long night. Wednesday, however, was much better (other than being tired all day).

Kathleen's anniversary present: Abraham Lincoln (already known as Abe and Linky)



Potential step forward in attempts to regrow brain cells.

Hey Bee,
As I sit here with my eyes ablaze and tears streaming down my face I wonder what our next 13 years will behold. It isn't fair. I wouldn't trade any of our time together for anything, but neither of us had anything like this in our game plan. We were so good. We saved for our kids, spent every possible moment together and now this. We both try to show courage and determination everyday and though I'm sure our bonds of love are as strong as ever, but I miss you more than I could possibly elucidate in writing. I still experience moments each day when waves of love for you wash over me, and there are just as many moments of extreme grief and despair. I don't know how I've hid this from the world for so long, but its there. I'm so weak without you. Please come back. Keep trying. Don't give up hope. Where flowers bloom, so does hope. Remember what we read in literature class in college: "Omnia Vincit Amor" Love conquers all. Forget what the doctor's say, you've already done things they said were impossible.
"Only she who attempts the absurd can achieve the impossible."

Kathleen again showed more than normal eye movement today. In the evening, she visited her sister-in-law's (Kim's) new home for an evening barbecue. Kim moved out today. During the bbq, Mike was soliciting ideas for an anniversary present for tomorrow without much help.

After the girls returned with dad from the A's game they spent some time with Mommy on her bed watching "Bean's Life" video. Kathleen looked visibly frustrated during much of this period. Otherwise, Kathleen had a typical day.

Kathleen had a really good day with little phlegm and she seemed relaxed despite the new casts.

Kathleen's first day back was marked by a busy whilwind. She had acupuncture and then got casts on both feet to help maintain her range of motion. She didn't seem to like the return to Santa Clara Valley air, however, and her oxygen dipped well below normal levels and her heart rate climbed much higher than normal.

Kathleen returned home from Pine Mountain Lake just as well as she left. She held her head through the whole trip (against the wheelchair back) and seemed pleased to return home after a great trip. The girls had perhaps their best days since Kathleen's accident while on the trip and thanked Mommy and Daddy afterwards and wanted to call and thank Caron and Rico too.

CALL THE WHITE HOUSE-
EXPAND STEM CELL RESEARCH!
TUESDAY AUGUST 9

The Coalition for the Advancement of Medical Research (CAMR) has planned a coordinated effort to show the President our support for embryonic stem cell research, and for H.R. 810 in particular.

Help flood the White House with phone calls on TUESDAY, August 9, 2005 , the fourth anniversary of President Bush's stem cell policy announcement!

CALL TO ACTION:

Call President Bush (202-456-1414) and ask him to
"SIGN H.R. 810 INTO LAW WHEN THE BILL PASSES THE SENATE"

You can also leave a message on the White House comment and suggestion line at 202-456-1111.

*Embryonic stem cell research has the potential to treat and better understand a host of diseases such as Parkinson's, juvenile diabetes, spinal cord injuries, heart disease, autoimmune diseases, Alzheimer's, and ALS.

*Polling data shows that embryonic stem cell research is supported by a majority of Americans.

*It is the will of over 100 million Americans who suffer from chronic and debilitating diseases and their families to see this legislation become law.

Encouraged by Kathleen's performance on the way up, the Davey's took her and the entire clan to Yosemite. Kathleen was up for a record six hours enjoying the beautiful sites. Even when forced to the brink of vomiting by drinking her food much quicker than normal, Kathleen showed determination by keeping her food down and enjoying the rest of the trip.

Kathleen made the three hour trip to beautiful Pine Mountain Lake without incident. Tired near the end of the trip, Kathleen seemed refreshed when she arrived (at Rick and Caron's place) and stayed up another hour watching the kids play in the lake.

Yesterday family and friends gathered to celebrate Alvaro's 30th birthday with an Hawaiian themed party. The weather was perfect for an outdoor party - sunny with a nice breeze. Activities inclueded water balloon tosses, pinatas and pin the mustache on Alvaro. Kathleen was up in her chair for much of the party and able to watch the activity. She seemed especially responsive to the sounds of the numerous children running around the yard. It was a good day for her.

Happy Birthday Alvaro!

Suspicion about embryos and stem cells confirmed.

Kathleen had a great day today. Dr. Dennis Steindler, chairman of the Mcknight Brain Institute, came by to visit Kathleen and the family. He is in town as an advisory member of the CIRM panel considering allocations to stem cell research. The family was honored to meet such a prestigious scientist who patiently and pleasantly answered an endless series of queistions. It was a inspiring visit and Dr. Steindler explained in detail to family and friends some of the current beliefs concerning
brain repair and some of the upcoming research which might apply to global brain injury patients like Kathleen and Chad. To put it succinctly, he viewed the challenges as daunting but that research shows real potential for regrowth of killed neurons. "I know that it is hard to hear that this is a daunting task with no guarantees, but I do have strong feelings that the field of
regenerative medicine will change humanity ....improving the human condition for everyone." He believes that the potential is there to bring back the person Kathleen Davey although the task is certainly not an easy one. Dr. Steindler thinks that stem cells, in conjunction with the stimulation of reticular activating system, and continued physical/occupational therapy may all be integral in this process.

There was a potentially positive announcement concerning the two suits which were challenging the constitutionality of Prop 71 in order to thwart stem cell research. The two suits were combined into one which stem cell leaders and advocates hope will provide a quicker resolution to the issue.


Out of the blue Kathleen threw up twice today (once very early in the morning and once in the afternoon).

"The most painful state of being is remembering the future, particularly one you can never have."
-Søren Kierkegaard

"Dr." James Dobson should personally apologize to Kathleen and all those suffering from life debilitating conditions (and their families).

Kathleen was checked out by a nurse today. Her blister was deemed concerning but not serious. She was also again high on her blood INR (too thin) level and her medicine will be tapered off even further.

Two interesting articles today on possible treatments for brain ailments.
Huntington's Disease

MS

Kathleen's phlegm was so bad last night that a heat pad was put on her chest to loosen her up. Unfortunately the pad was on too long and she got a fairly significant blister on her chest.

Kathleen had her trach replaced today by one of the Davey's favorites at Kaiser (the RT Luis).


Kathleen received her last pt visit from Kaiser today (which was extended after the initial cut-off due to the ethics committee hearing). After Amy (the float PT who was working for Kaiser) left to go to L.A. the value of such PT visits has not been significant anyway. The family will have to ramp up their own physical therapy for Kathleen.

Kathleen again had significant phlegm today and coughed vigorously. She is due to have a new trach put in tomorrow so perhaps that will help mollify the problem.

The girls, Mike, and Kathleen's mom watched Joan of Arcadia season one episode 7 together and cried vigorously at the end of the show when Adam's mom died. Music, television, and movies can sometimes be tough nowadays but the release seemed needed.

Bill Frist's support of stem cell research may sway enough votes to help override a likely Bush veto. One wonders if Bush's position would change if he had a traumatic injury in the family (He flipped so easily on whether or not he would oust Karl Rove's after the leak).

Great article detailing the problems with diagnosis and care of people in a vegetative state.