Been thinking of you tracey! I wish i could see and touch you! i miss you. every night when I come home i imagine that you spent the day with bella and what we would talk about. The thought of you not being home when I open the door makes me not want to come home. Bella is great, I hope you are enjoying her from you vantage point. miss you

I dont know how I should feel. I try to focus on getting out of the sadness, but it comes right back. I don't know what to do or how to feel. I feel that being as normal as possible diminishes Tracey's effected my life, and the future she wanted. I feel as if I need to make major changes in my life, and make sure Tracey's legacy lives on. I just don't know how or what to do. I am paralyzed. I am supposed to go to work in the morning. I dont know what the point is. I know I have to support Bella but What is more important, paying for Bella or being with Bella Tracey? I dont know how parents do it.

I thank everyone who is worried, I know everyone cares, but this is one that I am going to have to overcome alone. Well me and some therapy.

I cant stop thinking there is something in the house I should find. Something telling how she felt when we met. I need to feel my heart beat again. Its driving me crazy. i know she is trying to tell me something. She keeps sending me signs.. first the shooting star on Tuesday and this morning the dolphins playing in the surf while bella and I walk along the beach... But I dont know what it is..........

I cant believe Tracey is Gone. I feel like nothing is real, everything is fake. I know its not a nightmare, it is for real. I want to go back to Friday and give her another kiss and never release the last hug. I cant. i want to hide and never be seen again. Tracey was an unbelievable woman. She gave me my strength. I don't know how to go forward without her. We had so many plans...

TraceyTressler.com will be up shortly and will be updated with all Tracey's writings and documents that I think she would like released. Also I will post email from loved ones and anything else I feel Tracey would like. Its going to my way to show people that never met Tracey Diane Tressler what a special person she was.

The Maryland Service will be next Saturday, October 25, 3pm at Ruck’s Funeral Home on York Rd in Towson. There will be a reception afterwards.

I am planning the West Coast Memorial and wanted to first let everyone know that there will be a time for people to tell funny or meaningful stories about Tracey so start thinking and prepare to stand up and tell the story. Also, I am wondering if anyone would like to come up to the lectern and tell a prepared eulogy. I have had many request so only a couple can be filled but I want to know who would like to eulogize. Send me an email at bdelibro@gmail.com

Thanks,
Brandon

Some Photos from 2003

Maybe Brandon can move this album over to the sidebar where it belongs, but I have been gathering some photos and wanted to share them.

Tracey and Clyde in Kauai

West Coast Memorial for Tracey

A memorial gathering in honor of Tracey Tressler will be held at 2 PM Tuesday, October 14, 2008 in Santa Monica at Gates Kingsley Gates Moeller. Please see the map below for directions. The phone number is: 310 395 9988. Please note the correct address is 1925 Arizona Ave. The address on the website in incorrect. The family welcomes all guests. A separate service for family and friends on the East Coast is planned, and details will be announced shortly.

Thanks,
Clyde3/Ed -Tracey's brother


View Larger Map

Bella lost her mommy today

Clyde did get the deals correct. Diane and I were by Tracey side along with 2 nurses.

Tracey passed at 12:45 this afternoon. She started the downhill side this morning around 3:30. She did not suffer and I do not think she was in pain.

I am planing a memorial in Santa Monica sometime this week and Diane will plan one in MD which Bella and I will attend. I am still working out the details for the Santa Monica. I will post something as soon as I finalize.

I thank everyone for there love and support.

Brandon

Bye Trace. 1969-2008

I dont know what is the proper protocol in this situation, but I wanted everyone following this blog to know that Tracey died this afternoon, around 12:45 PDT. Brandon and my mom, Diane, were with her and courageously helped to comfort her in the last hours. I think that hospice may have arrived on the scene and that Brandon's mom, Debbie was there as well, but I am not certain.

Clyde3

I decided to give hospice at shot. They are suppose to start today.

I hope they do as tracey is out of her nightly nutrition. Also, I woke at 3 to check on Tracey and she had a 103 fever and is having a hard time breathing. I gave her some meds to calm her and to help with the fever, and to sleep. Her fever has come down a bit, but she is still laboring to breath and has not fallen asleep.

Tracey is in very bad condition.

Just for information - A meeting with hospice was already scheduled before I started on the hospice question. I never had an aversion to hospice. It seemed like a topic with much passion, and when I see that much passion I must test it. What do people know. are they really informed, or are they just passing on propaganda.

Thanks for the debate - I will update everyone one today's meeting later.

Bella has an ultrasound this morning.

I just spent the last couple of minutes in an email conversation with a loved one about hospice. The exercise helped me think though my objection to hospice. That is one of the reasons that the blog comments and emails help. It is always good to have a sounding board.

My issue with hospice is that I dont know what they would do to help Tracey. Can someone tell me?

I have gotten a comments and emails about hospice. The fact is everyone is telling me that hospice will help me as much as Tracey. That is my complaint, this is not about me, Tracey needs the care not me not bella. I am not looking for help from strange volunteers. All the care, love, and support need to be focused on Tracey and Diane.

Diane is flying in this morning. Christy stayed the night last night. Bella has been a bit fussy.

Tracey is feeling sick again this morning. It looks like her breathing is a little labored, but her mind seems pretty clear. I did ask if she wanted a doctor or to go to the hospital and she said not yet. She requested and received additional nausea medication.

I have no intention of pass-wording the blog. I just want to have freedom to post what is needed without worrying about hurting peoples feelings. My issues is that when I go back and read some of the posts some can be construed as not caring or making light of the situation. ie this post:

Tracey is not having a good day. She told me this morning that she feels BAD. I asked her for details but she said she doesn't know she just feels bad. I also asked her if she wants me to call the Doctor and she said no.

she now has 1 bird, 1 duck, 2 cats (other then big and little), 1 seal, and "little people" in her room. I asked if she was frightened and she said no.

This blog was always for the family to keep up with what is going on with tracey. I know it has been passed around to other then family members and that has stopped me from posting the day to day details about the going on but I think I need to let the family know the skinny. If by me posting these detail on such a public forum offends anyone in the family I am sorry but I want you to know whats going on.

Tracey has not felt well for about a week. She is suffering hallucinations. She sees many things from "little People" to a seal in her bed with her. Her ability to focus and reason is going away. She does not know the difference between the TV remote control and the telephone. I thought the Hallucinations were just her mind trying to fight off boredom but now I see that her ability use logic is also getting worse I am afraid that disease is taking over. Tracey is also getting much weaker, and is much more sensitive to pain. Giving the daily shots is becoming more and more difficult because it causes so much pain.

There has been some talk of Hospice, but I don't see what they can do to help this situation. Tracey doesnt want anything. The only thing she needs is someone to administer her meds every 6 hours. I think Diane and I will talk more about hospice when she gets here on Wednesday.

sad - I miss my wife.

When I have a moment to stop and think I am overwhelmed with Sadness.

I worry of the future struggle Bella will have by not knowing her mother.

my little angel

Okay back to politics for a post.

I dont know if anyone but me wants to know how this bailout is going to work, but if you do, I have posted the Bill. Read the 100 pages and decide for your self it is going to help.

Bailout.pdf

Not much going on today other then bella and I watching football. I did do some camera work. the Multi Screen now works so you can watch both cameras at once.

Tracey and I spoke about redoing her downstairs room. We will be setting it up as a long term "Tracey's Room". We will be moving the fold out bed and buying a new twin bed and make it like a real room. That will make Tracey more comfortable and will give her care givers more room to work. She like the idea. I will start shopping tomorrow. If anyone has any decoration ideas let me know.

My mom (grammy deb) will be coming over tomorrow and staying the night to give me a day at work.

Thanks to everyone about birthday wishes.

Grammy Diane asked for a close up of bellas face. This was this morning before she woke.

Just got back from Bella's 2 month check up and vaccinations. All went well. Bella is 8lb 1oz and 21 1/2" long.

When we got back tracey let bella lay on her chest and sleep for 1/2 hours. I think it was nice for both of them.

Hello everyone - Tracey is doing well. She took a bath this afternoon and then felt a little nauseated so i gave her some meds and she is now sleeping. Last night she asked for some food and she ate some chips, chocolates, and a bite of Chocolate Pop Tart. 

I hope the cams are working ok. It will be a couple of weeks until I get them both onto a site so you can see all by going to one page so hang in there. I see that people are checking in, a light goes on when someone is looking, so if you text me that you are looking I will make sure that Bella waves and you can see her face.

Okay, Bella cameras are up, Well 2 of them. They have not been integrated to the website yet but you can see them through the Panasonic server. I have the links listed on the right side of this page. I will email family a temp user name and password. Once you get in click "Single" at the top. Email me if you have any questions.

Our Year in Pictures

Tracey and I had one roller coaster of a ride this year!

Bella had a long day. We when out and walked around the long beach aquarium. She is tuckered out.

Tracey is resting, she is a little "out of it" today. Her mind is not as sharp as it has been for the last couple of days. No news to report. No dreams to report. I dont know if she read the pages or just told me she did, I need to read the book and give her a quiz.

The web cams are here and working in my office. I will get them set up so Family can see bella over the weekend. The feeds will be password protected so I need to figure out who needs passwords. Right now I have Diane, all the Clyde's, and my sister. I will send out your passwords after the cameras are up.

Pat update

Pat is being released from the hospital today! Diane will stay with him and will continue his Coumadin therapy at home. Good News..... 

September 18th noonish

I just wanted to give a quick update, no real news. Tracey did feel sick this morning and asked for the bucket but did not vomit. Now she is just sleeping. I gave her a reading assignment and told her if she doesn't read 10 pages she has to come sit with me outside... Also, Clyde 2 gave her an assignment to remember and tell him about her Dilaudid induced dreams. It was Clyde 2's birthday yesterday and tracey enjoyed speaking with him on the phone. She smiled and laughed a bunch. She also spoke with her mom and Diane gave her an update on Pat.

Grammy Deb called in sick this morning - I am going to deduct it from her pay.

Bella and I are planing an outing to get formula today.

More later

For all the visitors last week that went swimming - I told you there was sharks out there... I think they are sand tiger sharks but not sure... What do you think?

are you kidding me....

Federal Reserve to rescue AIG in $85-billion finance plan

Cancer Research only gets 4.7-billion

I have started a lot of companies in my life, most failed due to me being stupid.... how come when insurance, banks, and mortgage companies are stupid the government bails them out... the feds have never given me a dollar - list time I checked I send them money every week... and then some more every quarter, them some more every april....

Just wondering if Robert Willumstad will still get his minimum bonus of 4 million and his target annual cash bonus of 8 million - When you have 85 billion of the feds money its easy to misplace .00014% ...

Something has to change.

Middle of the Day Report

Tracey has been really good today. She got up and Grammy Deb and I put the new mattress pad and new sheets on her bed. While she was waiting for us to finish, she decided to go into the kitchen and pick out something to eat for lunch. This is a giant step, this is the first time she left her room. She decided on Chicken noodle soup. She only took 2 bites but it makes me so happy. She likes her new bed.

Grammy Deb came over and did my laundry. She also watched bella while I napped. Bella and I had the worst night ever last night. nether of us got any sleep. Bellas gas was so bad I could hear grumble every time she moved. She was miserable. I dont know what Grammy Deb did but Bella is doing great now. I hope she stays this way.

I have not seen Mandl or Kieth yet, Tracey is on her way with ice cream.

I understand that Pat is doing great. He had his procedure and it went as expected, they dont think this cardiac issue is a new issue, the doctors think it is related to the bladder procedure he had earlier last week.

Bella is sleeping.

End of another day of being daddy, homemaker, nurse, and breadwinner. Tracey is complaining of being Mucky... I dont know what that means, I asked her to explain but she just said just mucky... Tracey slept all day, I woke her every 6 hours and am keeping her updated on the pat situation.

Bella and I went to the mall and bought a potato masher for me and a Mattress topper for Tracey. Bella has been a little less gassy. I have been giving her the Gripe Water every 6 hours.

It looks like tomorrow the troops are going to be arriving - my mom, mandl, Tracy (nurse friend), and Keith (traceys nurse) will all be in and out all day. Wednesday Geneva will take Bella for a couple of hours.

Sounds like tomorrow is a big day for Pat. Please keep him in your thoughts as he is in ours.

Tons have happened in the past couple of days.

First and foremost is Pat. Pat was rushed to GBMC with Cardiac issues. Diane flew home as soon as she could on Saturday Morning to be with him.  Pats team of doctors are trying to get his heart back into a normal sinus rhythm, which is usually a pretty common procedure (shocking his heart) but a side affect with Pat maybe throwing a clot to his brain (bad). As always the best updates on pats condition is coming from Mary. If you are not on her distribution and would like to be email me and I will forward your info to her. I will do my best to keep this blog updated with pats status also.

I think we should all stop, take a minute everyday and pray and send strength to Diane. Caring for both a sick daughter and husband at the same time 3000 miles apart is more then any human can handle.

Tracey is resting comfortly. She has taken at least on bit of food each of the last 3 days. Which is really good. She has also smiled and laughed. I read her a story yesterday, and we when though a couple of her old photo albums. She enjoyed recounting all the freinds and fun she had. Chrisy stayed here all weekend and mandl came by a couple of times. Tracey also told me she felt stronger and might try to get out of be and go look at the nursery sometime today. We will see.

 

Diane being gone has thrusted me into the nursing position. Yesterday was the first day and i think I did pretty good. I had a couple of hiccups but nothing we need to tell Diane about. It is really hard being the nurse as I am so emotionally attached I dont want to do things that are painful but I know I have to. Its just tough.

Clyde 2, Ben and Judy are in town. They have been helping with the baby. They all leave tomorrow. Christy, again, was heaven sent and spent Friday and Saturday nights caring for bella.

Bella and I went for a walk though the flea-market this morning. It was a nice get-a-away. Bella is having a difficult time with reflux and gas. I am trying different formulas and other meds, but I have not found the magic combo yet. If you have any advice please feel free. The webcams have not shown up yet. target said they shipped 5 days ago, maybe monday. As soon as they show up I will be feeding the cameras and linking bella's post to www.helprasiemydaughter.com I will also be posting parenting issues I am having.

Pictures of Dianes 66th birthday

The last  couple of days have been the same. Tracey does not want to be admitted to the hospital. So, I am not going to force her. Diane wants her to shower but she also refuses. Today she closed her door and doesn't want anyone to see her. 

Clyde 3 is home safely and I thank him for his service. He spent 8 days here and never left the house. Next time he is out at thanksgiving we have planned on going to the mountain cabin and let lilly play in the snow.

Diane is back in town and is now in charge of tracey care. She is also doing a good job of caring for me.

Clyde 2 is in town and expected to make an appearance soon.

I took Bella to he Doctor yesterday because she was being really gassy. She is now 7 1/2 pounds and 20" long. The doctor doesn't thing anything is wrong, but would like us to only feed her every 2.5 to 3 hours and not graze.

I will post pictures from Diane's birthday and Clydes 3's channel swim later...

Stand up to Cancer (by Brandon)

Stand Up to Cancer - Please,

I want one person to walk into the room where a 39 year old mother of a 6 week old daughter is wasting away and the Doctors cant even relieve her nausea and tell her "We are Standing Up to Cancer and we had a great TV fund Raiser" .... The AACR has had 100 years to make a difference, "Stand up" and tell Tracey how much funding has gone to her... I guess if I wanted to pay AACR's $25 per article per 24 hour period fee I could read about what they have done. The public Website is just heartwarming stories of greatness.... Come on over and look at what cancer really does... Its in the room next to me.

In 2007 our tax money gave 4.7 billion ($4,792,600,000.00) (over $30,000.00 per new case of all cancers) for Cancer Research.... Lets stop this "Stand up" shit.... I know it makes people feel good but it doesn't help the problem. Stand Up received 100 million in donations a whopping 2% of the current federal research budget. How much advertising revenue did the 3 networks lose during the event. Do they get a tax write off?

Where is all the money going... Oh, 4.7 billion is nothing compared to the 1.5 Trillion (1,500,000,000,000,000.00 - 2004 estimates) paid to the healthcare industry to treat symptoms.

Can someone tell me why Breast Cancer Research get 2 times the funding as lung. Breast Cancer has a 90% 5 year survival Rating compared to the 15% of lung cancer. Breast Cancer kills 41,000 people each year, Lung Cancer kill 4 times that 160,000 people...  THE RESEARCH SHOULD BE FUNDED PROPORTIONAL  I guess as a country we like boobs better then lungs....

Now, I am fired up... I think I am going to start a non profit that directs research money... Who wants to be on the board?

Sept. 7 (by Clyde3)

Tracey is doing poorly. She isn't very responsive. This morning I asked her how she was feeling and she said "awful." The dexamethasone, which was helping for a couple of days, is not making a much of difference. All she wants to do is sleep. Who can blame her...

Two days ago she was holding Bella, but today I don't even think she would have the strength.

Diane is doing the meds, with me covering from time to time.

We all share the baby duties during the day. Brandon gets the night shift. Bella was a little fussy last night, so he's functioning on no sleep. Pretty ordinary stuff in the baby department.

Clyde2 shows up on the 11th. I am departing tomorrow, to be home in time for the parent/teacher meeting for Lily's pre-school.

Happy 66th Birthday, Grammy Diane!

Friday 5 Sept. (by Clyde3)

Well, Grammy Diane has arrived. I'm catching her up on the new hygiene and bottle-washing techniques I've instituted, and she has enthusiastically embraced them all. Actually, she thinks I have OCD and just humors me until she's out of sight.

Bella is enjoying the switch to Similac powder. Belly-gurgling has been reduced, as well as spit-up- AND poops have increased. It's miraculous. She's drinking with wild abandon. Her schedule seems to be less abstract than before.

Tracey seems a little better. She doesn't like being awake, but her nausea is better and she's more coherent. We are chalking that up to the steroids- especially since I managed to rouse myself last night for the 2AM dose of dexamethasone.

Grammy Debbie was here yesterday, and she and I had a great time switching off on the child care. I'd like to say we split the chores, but, to be honest, she did about twenty times what i do in a day within the first hour of her arrival. She disassembled the upstairs bedroom, washed everything and put it all back together before I had the dishwasher loaded.

Tracey has been going back and forth on whether to take the Tarceva. I am urging her to try it for a week. Her opinion changes based on how she's feeling. When she feels horrible Tarceva sounds like a good idea. Otherwise, she' skeptical.

Click on the picture for more photos.

Wednesday 3 Sept. (by Clyde3)

Well it's coming up on little Bella's originally-scheduled birthday, as well as Grandpa Clyde's and Grammy Diane's. Could be more that I am not aware of- sorry if i missed you.

I've been here since Monday and I hit the ground running. Tracey was feeling crappy and looking pale when i got here. We all conferred and decided to jack-up the steroids again, since they had been working to keep the nausea at bay.

Not much difference on Tuesday, but Dr. Garon gave orders to put the pedal to the metal and max-out the dosage. Tracey told me this morning that she felt "a fraction better," but I think she has improved more than that; nonetheless we both agreed we would accept a fraction as a gift and not quibble.

Mainly, she has had a bit more alert time and has held her daughter and soothed her for about 15 minutes at a time. It was nice to see. Hopefully, with the steroids administered 4 times a day, Tracey will be back to where she was last week. She always picks the week when I come to make trouble.

Anyway, I've assumed the nursing duties, at least as much as i can without getting "sister cooties," under the supervision of my mother. Keith, the very kind and caring visiting nurse, got into a car accident so I am taking his shift while he's out. Good thing the Marinol tabs show up tonight-- I'll need 'em.

Tracey received my first subcutaneous injection without complaint and gave me high marks, though this may have just been out of politeness.

Bella is great. She is tiny-- compared to my 3yr old, so I have to try to remember how to handle all the infant care. Changing a poopie diaper is like riding a bicycle- you never forget how, although my swaddling skills have deteriorated to a sorry state, I am embarrassed to admit. I've included a video at the end of this post. Not the diapering part, just Bella.

Brandon is still Superman, even though he doesn't think he is. He has tremendous strength and is a great husband and superb Dad. I admire him greatly.

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Well its labor day and Diane has left to go see her husband, Clyde 3 is on his way. Bella, and Tracey are sleeping, Bella should be up any minute, but I will try to get this update finished.

Tracey is very sick, the nausea has come back and is taking a toll. She has started to shut everyone out including Bella and I. She tries to sleep though the days, just waiting for this to be over. Christy and Alexa were over for diner last night, they tried to  get tracey out of her room by enticing her with a fire pit and smores but it didnt work. We went ahead and enjoyed it though. Christy stayed the night for the second time this week and took care of Bella though the night helping everyone get a little more sleep. She has been a great help.

Bella is doing good. She is awake a lot now, looking around in amazement. This week I will get the Bella cameras up so you can start seeing live view when you please.

I will keep updating as much as possible... 

These are pictures of last nights sunset.

The end of our first full day home. It has been a long road  and one that I hope I am never on again. I am so happy to have my Wife, Daughter, and Mother-in-law under one roof with plenty of room. I still cant get Diane to sleep in a bed, but I am getting a bed for Bellas room, Then maybe she will. 

Tracey has been really great with the transition. I know it has been a big stress for her, but I appreciate her putting on a happy face to make my life simpler. Tracey did have some nausea last night, but all be told she is much better then she was in the hospital. When I ask her to tell me how she is really feeling, she does say that she knows she is really sick and feels like it. 

Last night was our first night back, I accidentally locked big kitten out back, and little bugged all night long. The cats are causing tracey some unneeded stress, she has talked about giving them up. 

Bella was Okay last night, I say Okay because I get night duty and for some reason she didn't want to sleep for more then 20 minutes until 5-am. Then I got a solid 2.5 hours. It is really hot in our house. I am sure that is contributing to the awake times. I hope tonight is better.

Diane will be heading back home for a couple of days on Sunday, I hope she gets some much deserved rest. Clyde 3 will be coming out in dianes absents. Also, my sister Lyndsey took a week of leave from her show to see bella and will be here tomorrow.

I will try to do a post every night before I go to sleep. I hope to have the Bella Web Cams up by the end of the weekend so everyone can watch her like the Truman Show.

Heading home! Tracey, Diane, Bella and myself will be leaving westwood and going to huntington beach on Sunday.

Bella's had her first doctors appointment on Wednesday. She is still healthy and 5lb's 5oz's and 19 inches long.

Alexa and Christy stopped by yesterday. Christy is going to take Diane shopping today. Trace is doing well. She is still pretty much isolated to her bed, but she does get up to go to the restroom. her dr. appointment with her Oncologist went okay. She was written a script for the Tarciva. Diane attempted to have it filled yesterday by the insurance company has not approved it yet. we are hoping for Monday. Tracey has a follow up on Thursday and her doctor wants to see her progress.

I hear that some people can only see the right side of the sideshows. I don't know how to fix it so I have made all the pictures available by clicking the "family Photos" link just to the right.

If you can not see the "family Photos" link let me know and I will put it somewhere else on the page.

Tracey will has an appointment with her Oncologist this morning. Will talk about taking Tarciva

Bella is out of the hospital and home napping with her mother.

Thanks to everyone that made this possible.

Its been pretty crazy around here getting Tracey to the apartment, her meds, Bella at the hospital, and working with 100 mile turn around... Sorry that the posts have been few and far between...

Here is the current poop - Tracey is resting well. I think she feels better, she smiles a lot more. Diane is doing a great job of caring for Tracey. Without Diane, Tracey would be in deep water. I am doing my best juggling Tracey, Bella and work all in different geographical locations. The good news is that one of the locations will cease to exist tomorrow as Bella is getting out. Tomorrow Bella will be going to the apartment and will be sleeping alongside her mother. Tracey is so exited. I will be taking the rest of the week off spending most of my time figuring out how to manage the following week / weeks. Tracey has a Dr. Appointment on Thursday AM. My mother will be taking care of Bella at the apartment so both Diane and myself can be with Tracey.

I have invited both Diane and Clyde 3 to be Blog Authors. If anyone else would like to post to this blog send me your email.

I guess I forgot to post the living arrangement update. I did say the when Bella got out she would be going to the beach, but that has been postponed. When I posted that I thought the only reason we would be at the apartment would be so we could be close to Bella, I failed to realize that Tracey is much more comfortable at the apartment due to the proximity of her doctors. Hopefully in the near future we can head down to the beach.

I will post some pictures of the homecoming as soon as it happens tomorrow... maybe even a video.

tracey is resting and watching

tracey is resting and watching the opening ceremonies at the APARTMENT.

tracey is resting and watching

tracey is resting and watching the opening ceremonies at the APARTMENT.

Tracey is moving to the apartment today.

Yesterday was a busy day. First Diane is back and we are glad to have her, she has renewed energy and showed up ready to go to work. So, I first set up a meeting with the case manager, doctor, and social worker for 1:30. Tracey allowed a CT scan done, which also was schedule for 1:30 so while diane and I were meeting about going home Tracey was getting scanned. Worked out very well. Diane and I spent just over an our discussing and sometimes arguing with the case worker, but in the end I think we had a pretty good plan that just need the final little details worked out. Tracey will be going to the apartment. Tracey was being wheeled back into her room as Diane and i returned. We discussed the plan with tracey and she was agreeable.

Christy came by and held Bella and sat with tracey for a while. The diane, christy and I organized the room and decided what would be going to the apartment and what would be going to the beach. Christy and I loaded our cars and went back up to say goodbye and Dr. Garon (oncology) was talking to Tracey and Diane about the CT findings. The CT found some hemoraging in her brain. Which may answer the nausea question. But does mean that Tracey is not going home and she does have some more decisions to make. They have stopped the Lovenox and she will be meeting with the hematologist today.

Okay, we dont know if and when we are leaving. Tracey is trying to get the MRI and PET scan done but she needs help from the doctors on how to drink the barium. I think they will keep her until they figure a way. they may drug her up so much she cant get nauseated. We will see.

Spoke with Dr. Anderson and she cleared up my confusion.

Tracey told the Doctors that she is not ready to go home as nothing has been arranged. She really needs to talk to someone in discharge and a case manage to find out how we are suppose to go home on IV pain Drugs, Nutrition, Antibiotics, fluids and what ever else... Someone needs to help we have no idea what to do.

doctor came in today and

doctor came in today and told her they are sending her home today. I don't know how. I have never spoke with any case worker.

Wow 300th post

Well I had my first run in with NICU tonight. I dont want to go into details, but I think I was lied to by omission. I hope I am wrong and Dr. Anderson calls me in the morning and clears up my mis-understanding.

Tracey is mostly the same, I did think she looked a little better but she said it was about the same. No changes to her treatment. Maybe tomorrow they can find something that might help.

The Doctors finally gave in and have started Tracey back on Steroids (decadron). Which has always reduced her nausea and increased her appetite.

Bella my have her MRI tomorrow. She did not eat as good today as she has been so I think we are still looking at early next week before she goes home.

I am starting to think that when Tracey goes home she should go to Huntington Beach, as it might be to difficult to get settled into the Westwood apartment for just a couple of day's then do it again in Huntington beach. Just a thought.

Tracey had a really bad nausea night. She has not gotten a break for the nausea for about a week. the new meds don't seem to be helping. I don't know what the next step will be. Tracey has not yet signed her consent for the PET or MRI scans the dr. Garon ordered. She told me she would today if she is feeling less nauseous.

I do know that the this medical unit at UCLA sucks. The nurses never answer the phone, after notification of an issue it takes at least 20 minutes and sometimes up to 2 hours for them to get to the room. Nobody is ever at the desk. I think its a management issue because its not one or two nurses. The entire nursing and care partner staff have a very "I'll get to you when I feel like it" attitude. they want noting to do with patient care and everything to do with doing the least amount of work. The The doctors are good but you only see them 5 minutes a day and they have no control over the nurses. Sorry just had enough of this!

On to Bella - Bella is doing great she finished her first bottle last night. She has been working on it for 2 days and the best she was able to do before falling asleep was 21cc. Last night she did her all 35cc. The faster she does that every feeding the faster she goes home. Bella Xray came back fine, no issues. We are still waiting for the MRI.

Hi everyone.... I am working on a little SURPRISE (which means don't tell her!) art project for Tracey and I need Pictures of Tracey and I together. I don't have any pictures from thanksgiving or Christmas if anyone does please send them to bdelibro@gmail.com Also if anyone has any other random picture of us at a party or just hanging out with your kid, anything, I would appreciate it.

Thanks
B

bdelibro@gmail.com

Tracey is fighting nausea. She has tried every conventional method they have to offer and still constant 24 hour nausea. They are going to start trying combinations of drugs for different illnesses that have a side affect of an anti emetic. Tracey is seriously contemplating taking Tarceva ( http://www.tarceva.com ) but the stumbling block is that she cant swallow the pill. Hopefully the new combo anti emetic will help and she can start drug treatment.

Tracey will be doing a PET scan sometime soon. The doctors want to check for and disease progression. I will update you as soon as I know more.

Tracey will be going to the Westwood apartment on Wednesday with a home help nurse. She will stay there until Bella comes home sometime the following week. Then both Tracey and Bella will go to Huntington beach.

Bella - As a precaution Bella has had a chest xray (which was fine) and is scheduled for a contrast MRI of her brain and organs. The Pediatric Oncologist wants to make sure no cancer was passed. There are only 5 cases known so this is really just being overly cautious. They did do a biopsy on Tracey/Bella's placenta and it came back negative. I will update you went I know more.

Tracey is not feeling well today. She is still in a lot of pain and is very nauseous. She still is not eating. The pain team spoke with her today and discussed a couple of options. Tracey asked them to confer with the rest of the team as she still doesn't know what the rest of the teams treatment plan is.

Bella came by today and visited Tracey. Tracey was smiling ear to ear... I will post photos a little later.

They have stopped feeding Bella by bottle. She was using too many calories, so they will try to start up again in a couple of days. So her come home day has also been delayed. Everything else is great.

Tracey had a bad day. she just feels bad. She will be moving out of postpartum in the next couple of days. She still hasn't been able to go see Bella, maybe tomorrow.

Here are some more pic's

http://picasaweb.google.com/bdelibro/Bella

Okay, The Pulmonary team was in and said they are very unimpressed with the xray. Tracey does not have pneumonia. It is there recommendation that her lovenox is changed to once a day and she remain on it when she is released from the hospital (there is no talk of her going home)

Tracey is feeling much better tonight. I had to head home as tomorrow is a very busy day at the office. Diane is taking great care of her in my absence. Tracey is working hard on trying to get to see bella.

Bella's bilirubin levels are high so they are starting phototherapy. She should be okay in a couple of days.

Tracey has had a rough day. She was unable to keep her body temperature regulated she would swing from teeth chattering cold and a temp of 97 to a ball of sweat with a temp of 102 in 30 minutes. Her O2 was low 90's, and she placed on oxygen. Her pan was still high. The doctors though she may have had a new clot in her lungs so they ordered an xray. Results show she has pneumonia. They started a broad spectrum antibiotic. She is also on Tylenol and motrin.

I also think she maybe suffering some withdrawal symptom as she is not using as much dilaudid and her body would like her to. She has adjusted her dulaudid intake, she will be pushing when she thinks she is having a withdrawal symptom.

Bella is doing good. she is now eating 10ml every 3 hours (well it being poured into her stomach)

Tracey is feeling better. She did have a mid grade fever this evening. She was scheduled to have 3 units of blood transfused which was delayed because of the the fever. They have just started the transfusion and have added antibiotics as a precaution. Tracey's pain seems to be much better. She is only feeling pain from the surgery and a rash that has started on her rear.

Bella is doing great. She is keeping her food down and she is no longer on any o2. They may start reducing her methadone tomorrow.

Mommy and Bella

and the name is...

Bella Tracey De Libro

Thanks for all the help

Tracey's pain seems to be getting better. She is still planing on seeing the baby tonight even if it 3am. Names are being suggested left and right. Tracey said we will finalize our decision tomorrow.

Baby is doing good. she has started methadone and they will start weening 3 days after they find a dose that makes her happy and she eats without vomiting. She has had one dose and one rescue dose. She is breathing room air. She does not have the coordination to breath, suck and swallow yet so she is getting nutrition the same way mom is via IV.

Tracey is back in PostPartum room 5321. pain is still high but she is working on it. Diane and I are ready to go to sleep.

Baby is getting an IV they tried to give her a main line but it keep going into the liver so they might retry tomorrow. She may not need it.

4 hour and 16 minutes old and all is ok....

Good night

Quick update

Tracey's surgery went fine but she is in the worst pain I have ever seen her in. The doctors have given her 8 mg dilaudid and 50 mg fentanyl and in the last 15 minutes and her pain is still a 10. They think this should become controlled within an hour or so.

The baby - which does not have a name yet - is doing good. Cried loudly at birth. 4lb 4oz 15"

Diane, Debbie, Jo, Geneva, and lucky were here.

Baby is here... Doc just

Baby is here... Doc just told me and said she was beautiful. More later

Tracey is in the OR

Tracey is in the OR

tracey is in pre op.

tracey is in pre op. She is going under general so nobody will be with her.

They are getting tracey ready

They are getting tracey ready to move to pre op. Diane is going in the OR with her.

They are getting tracey ready

They are getting tracey ready to move to pre op. Diane is going in the OR with her.

Surgery scheduled for 10pm.... will keep updating

water broke baby coming... We

water broke baby coming... We need a name... Shit

Tracey is still on the fentanyl patch 150. Also, Diane did fly on an airplane not the giraffe but if you ask Diane she might as well been flying on the giraffe (row 24). I will ask about the nerve blocker.

Tracey is no longer on O2. it appears to be just an issue with the machine. Tracey's pain is still increasing. The pain guys dont know what to do. they have asked tracey what she wants. They have increased her Dilaudid to 1 mg every 6 min, but that is means she is up every hour when the pain comes back. I am looking for some help with what Tracey can take to give her some long term relief. If anyone has any ideas, because the pain guys dont, please let me know.

Diane flew the giraffe across the country. It is very cute. Tracey is really getting into the baby now. She still has not decide on a delivery date or a name but I think she is close.

thanks

Traceys O2 sat was in the 80's. She has been put on 2L O2. Tracey had another mediocre night. She was up every 2 hours. Sitting up helped the pain but not the sleep.

Traceys left foot is really swollen. Just keeping an eye on it.

Tracey has had a mediocre day. Her pain is barely controlled. One missed step and it spirals out of control. There is really no plan other then increasing the amount of the dilaudid but every time she takes more she falls asleep.

Today, while she was alone her she cleaned the room. She couldn't just lay in bed. She just wants to be "normal". I guess we will find out tomorrow if there is a connection between walking and increased pain.

Dr. Tabsh gave her 2 marie callender's pies. He is a really nice man. Tracey was suppose to get a massage today but it did not happen.

Diane will be out tomorrow. Tracey is looking forward to seeing her.

I will be working again tomorrow.

Tracey's pain has been increasing. She thinks it may be muscle spasms. The Doctors have ordered a massage. She has not slept in a couple of days.

Clyde will be leaving tomorrow. I will be working so tracey will be alone.

Clyde 3 said...

tracey is better this morning but very tired. after she naps we'll try to assess whether there is additional
drowsiness from the increased dilaudid dosage.

pain team came in but were unaware of last night's episode. discussed it with them and sent them away with a 3-point action plan:
1- get a replacement fentanyl patch
2- make sure ob/gyn and nursing feel comfortable bolusing at closer intervals
3- explicitly note that oxygen levels and respiration be more closely monitored during any such episodes.

clyde3

ps- forgot to charge my phone last night.

Traceys pain is better. She is a little nauseated. I suppose its just part of a hang over from last nights drug fest.

I will be heading home to supervise the nursery decorating.

Tracey is sleeping as she didn't get to sleep until around 4am.

She has been holding the baby's picture non stop. She is sleeping with it occasionally waking up to make sure she still has it.

i think she is falling asleep... i know i am... Nursery setup starts in 7 hours...

The PCA has been increased to .8 every 6 minutes.

In the 5 hours from 9pm to 2am Tracey has used 19 mg Dilaudid and her pain is still not controlled. her normal usage for an entire day is around 9 mg... The doctors plan is to just keep increasing it until Tracey feels better.

OH and the 2nd year doctor told Tracey that if she could get the pain down to an 8 that would be pretty good.... I almost blew my top.

Okay her is the plan... 1 mg dilaudid IV push recheck in 25 minutes if the pain has not reduced give 1 more mg dilaudid IV push and increase her PCA to .8

Tracey is really high

Its now been an hour from the time Dr. Shaw came in and said that she didn't want Tracey in pain and would talk with the team and will be back with a pain plan asap. we still haven't heard from or seen her... So now we are into our 3rd hour of pain at a 9... Tracey is has so much dilaudid in her she is hallucinating but she is not getting any pain relief.

Pain 9.5

Tracey is still hitting the button every 6 minutes.. she did get the 1 mg IV push..

Pain 9

Tonights 2nd year doctor finally showed up and really disappointed Tracey when she started asking where her pain was... Tracey thinks that she has had this pain for 4 months and it has never moved the doctor should be aware of the case before she comes in....

Dr. Shaw is contacting Dr. Tabsh.

Pain 9

tracey has asked the nurse to call the doctor again. This is the 3rd call

we are almost an hour from the time we requested a doctor and we haven't seen one yet. Traceys pain is still escalating

Pain 9

Tracey is getting her midnight meds... Lovenox, and Kytril... Also her vitals - her pulse rate has been in the 120's for a couple of days. The thought is that she is dehydrated. The doctors have ordered 500 ml flood's free...

Still waiting for the doctor.

The nurse received approval for 1 mg Dilaudid IV push, but Tracey wants to wait 10 minutes to see if the pain is subsiding on its own. Tracey also wants to talk to the doctor and if she get the additional dilaudid it will put her to sleep and she will be completely out of it.

Pain 7

Tracey is in a lot of pain tonight. She just asked the nurse to ask the doctor what they can do.

Pain 8

She's a Tressler!

I am very sorry that I have not updated for the past 3 days. I will try to bring you up to date.

Diane left, Clyde III is here.

Tracey pain started to creep up and tracey increased her dilaudid to .6 - The pain team is going to let her push her button every 6 minutes. Tracey is having some discomfort and tenderness in her ears. Her taste buds have run a muck. She did eat a half of a peach today.

tomorrow is nursery day. Mom and Bob are painting, Geneva and lucky are bringing lunch, I will be there supervising. Anyone that want to help clean and get the house ready is welcome to come by. We should be starting around 10 am.

New WOW for improved care. The pain team came in today. I know I have railed on them many times, but today's guy was great. He was helpful. know the answers to the trick questions and know what the long term plan was. I hope he is the guy we see for now on. I wish i knew his name so I can ask for him.

Tracey's day was a little rough. The doctors have discontinued traceys steroids. Which makes her worry. Then she is loosing a lot of hair so the nurses changed her bedding which minutes later she spilled water all over. She is just on edge. But still smiling.

Tracey walked today without the walker or any help. She was scared and said is was like trying to walk on a tightrope - concentration wise..

Tracey finished her last Radiation Treatment. She is feeling very weak. But is happy it is over. She May have some friends over tonight, she wants to wait to decided for an hour or so.

Transport again left us so I wheeled Tracey back to the room. One of the transport people saw us in the elevator and followed us to our room. Tracey was sitting the the chair waiting for the nurses to change Tracey's Bedding, and the transport lady asked if she was going to get out of the chair because she cant leave the chair on the floor. I hope they don't get what they are asking for in the strike. Only good patient care should be rewarded. Patient care is the last thing on transportations mind.

Tracey felt better today. My mom and Bob came by and Tracey had some good laughs. It was a nice visit. They are going to start painting the babies room next weekend. Tracey will be drawing a picture of what she wants it to look like. If anyone wants to help them, let me know I will try to coordinate.

Tracey is not feeling well. I dont know what is wrong. she just says she feels like shit. Diane said she was nauseated earlier.

I think the care over all is much better and most of the team members are on the same page, except pain. I dont know why they refuse to look at Tracey's chart before talking to her. It is really frustrating. they never have any information. They truly are useless.

Tracey did not sleep well last night. She just couldn't get comfortable. Today while getting ready for radiation she did vomit. She asked to speak with Dr. Stein because she wants to be sure it not related to them reducing her steroids again. Dr. Stein and Dr. Tabsh showed up and ensured her that its not. But they will keep a close watch.

Today's radiation trip was the best yet. Quick and professional. No waiting for elevators no delays at radiation. in out out. very nice.

Tracey is now sleeping -

Tracey went down for radiation. She now only has 2 left! woo hoo.. One small snag is that radiation will be striking on monday... Tracey was told that she will get her treatment anyway. The schedule will just be a little crazy. Transportation left us again. so I wheeled her back to her room. I think that is easier, but I dont think it is within hospital policy.

Tracey wants to veg out and watch tv tonight. Diane is out shopping.

Im back. Tracey s is doing pretty well. she walked again today with PT. Dr. Tabsh came by and discussed the birthing options with me. He said when ever she want she can have the baby. He would like 35 or 36 weeks, but its up to Tracey. The baby is in great shape.

Tracey care is much better. The team seems to be working very well. I know they are working on a Go home plan for tracey so she can go home at the same time as the baby.

Tracey patch was increased yesterday to 100 mg. to try to reduce her dilaudid use. tracey said she thinks it has.

I want to thank the team and administrators for coming together so quickly and improving the quality of Tracey's care.

Wow! Christy and Alexa came by and had a nice time with Tracey. Tracey smiled and laughed some. She also let them see and touch the baby belly. What a leap forward. I haven't even seen it in almost 3 weeks... Tracey's belly is getting big and wide. her belly button is even - not in and not out. She smiled and spoke a lot about the baby. It was very nice to hear. She is going to sleep now. I hope tonight is as good as last night.

Tracey is having a good day. She walked with a walker in the hallway. She has moved rooms. She is now in postpartum room 5123. Its a smaller room which is nice because we are much closer to Tracey. The bad thing is that we are back to training the nursing staff again. Tracey gets frustrated when a nurse doent seem confident.

Alexa and Christy are coming by tonight. Tracey is looking forward to talking to them.

more later.

Good morning - I am not at the hospital but I did get an update this morning from Tracey. Everything went great last night. Tracey and Diane had the best night so far at the hospital.

Jane - Diane wanted to cut her hair but Tracey would not allow her to.

New hair cuts

Parking - I had to buy a new long term parking pass 25 days (the longest they offer) for $100. I asked the lady "where can I park with this" and she started to tell me that it is for 200 medical plaza (the building next door) but if it is full I can park across the street at the old hospital. I asked her if 200 medical plaza gets full very often and she told me "nobody wants to pay the $13 or $25 a day for hospital parking so everyone is using 200 plaza because its only $10" I think someone needs to rethink there parking policy.

I wonder if the city knows that the hospital is using the MOB parking lot as hospital parking. I know that both the Uniform Building Coda and Los Angeles Department of Building and Safety are very specific about parking and spaces. this hospital is required to have 700 (2 per bed) parking spaces. The MOB is required to have 1 space for every 200 Sqft. If the hospital is trying to use the MOB parking standard they would need 5000 spaces... i don't think they have that... I think someone needs to rethink their parking policy so that the people using the hospital park at the hospital....

Tracey had a little breakdown when transportation came to pick her up for radiation. The issue is that Tracey needs notice before so she can use the bedpan, get dressed, have the anti-nausea meds injected, and get mentally ready for the trip. Again, transportation showed up 30 minutes before schedule. Not that is a big deal, they waited for her, but she feels really pressured and it increases her pain. We are going to be sure transportation doesn't get here any earlier then 45 minutes before her appointment and we will have her emotionally and physically ready..

We walked by the source of Friday nights fire alarm. The main must have been on the parking level. The underground parking lot is still full of water and they have blowers throughout the hallway that links the hospital with the HSB's. Which makes it difficult to transport Tracey as they have 20 extension cords running across the hallway. They have also knocked holes in the walls about every 18 inches so the blowers can try to dry out inside the walls. Nothing like building a new hospital and in the first week inviting mold to move in...

Well i couldn't take it anymore. I went to the desk and had another nurse stop the beeping. it has been over 27 minutes now. our nurse still isn't back with the blood sugar thing. I just don't understand how the decision making process works with some people.... lets compare. Go in the room and hit 4 buttons and stop the beeping now and then find the equipment I need, or go walking around the hospital for 30 minutes and make my Tracey listen to the beeping - I guess I will go walk around the hospital and let the beeping go. How is that better?

Diane found the nurse and she is looking for the blood sugar testing machine... I guess she cant come in and stop the beeping or hang the new IV's because they again have missplace a piece of equipment they use every 6 hours on tracey......... Why cant she just stop the beeping and find the blood sugar machine after!!!!!!!!!!!!!!!!

... It looks like the weekend is over and we are back to the same old issues. 2 out of the 3 IV's are out and have been beeping for 15 minutes. Diane has gone out twice to find someone to help.

Last night was kind of rough. Tracey's pain hit a 10 at 5am. It took over an hour and 2.5 mg of Dilaudid to bring it back down. The Physical Therapist came in around 8 and argued with Tracey for about 15 minutes. PT told her that they could not make any kind of schedule because of the hospital environment. Tracey ask "why not, its not like someone needs physical therapy STAT" Tracey and PT finally came to an arrangement that they would be by sometime between 9 and 10 am. Tracey did do some exercised and did get up and walk with assistance. That is good.

Dr. Tabsh came in and Tracey told him that she is very scared of discontinuing steroids. Dr. Tabsh told her that he would do it very slowly and would watch very closely for any changes. He promised her that she gets to make the all decisions and everything is up to her. She agreed but she is still scared.

Tracey did get the ultrasound of her leg to see the progress of DVT. She is hoping Physical therapy comes by tomorrow and gives her some exercises she can do to strengthen her right side. Tracey gets really sad when she thinks about continuing treatment, and wonders if she will every get out of the hospital.

Tracey and I have had some good conversations in the past couple of days. She wants to try and tell me a story tonight.

Another uneventful day today. Tracey napped and watched tv. she watched tennis, National Lampoons Vacation and now My Cousin Vinny. She is still in pain and sad off and on. I have not gotten a chance to upload the photo of Tracey's new hair.

Tracey has taken control and shaved her head. I will post a photo tomorrow. Everything else is about the same. no nausea today. Pain is in and out.

Tracey is getting restless lying in bed... she is still too weak to get up so she is really frustrated. She is sleeping now. I think they are suppose to check her DVT and make sure it has been absorbed. I will find out at noon.

Tracey was up 5 more times once for more then an hour. She is sleeping good now. She is still filling nauseated. She is starting to let her pain get worse because she is afraid the dilaudid is causing the nausea. I dont think that is a good plan. She spoke with the resident this morning. lets see what happens

So far eventful night nothing to do with Tracey other then no sleep. She had a plan, She was only going to have to wake up twice between 11 and 5:30... not so much

11:00 sleep
11:10 Dr. Tabsh
11:30 TPN beeping
11:50 Fire Alarm going off.. And still going off. The nurse told me it was because someone went out the alarmed stairway... like im going to buy that. Let me check the facts - the alarm has been going for over an hour - there are mutiple fire engines on scene - There is no water for the sink or the tolet - there is water in the street - put all the pieces together and I come up with broken water main... Oh fire alarm just stopped... Sleep time.

Just went over the night schedule with the Nurse. She is currently scheduled to be awaken every hour from midnight to 7am. The nurse is going to work with Tracey and move some things around so Tracey will only be woke up at 4 and 6.

Tracey is watching PBS fireworks show. she is smiling and talking. She wants everyone to pray that she gets her strength back. If she does, she is ready to fight the good fight.

As I thought there was no conspiracy - UCLA changed the logon and password... I am back on.

Tracey is having her blood sugar checked every 6 hours

1 mg kytril
blood sugar 134

Happy 4th. Sorry about the lack of updates. There really is no news to report. Tracey is pretty much the same. Tracey is in a constant struggle with comfort. Sitting or lying on anything for 6 weeks has got to get old. She is always trying to roll from one side to the other, putting pillows under her knees, taking them out... just trying to change position to feel better.

New stuff:
She is having tremors - I talked about this a couple of days ago. it is like she is having muscle spasms. Also, she gets really dizzy - Diane suspects its vertigo.

The staff has been great about adjusting there schedule allowing Tracey less interruptions. I am not a conspericy theorist but my user name and passwork for the UCLA wifi no longer works.... I will have to ask if it changed.

sorry I haven't blogged lately.

sorry I haven't blogged lately. Tracey is doing better as far as moving her arms and legs. She is still vomiting. She sleeps a lot. More later

The Morning is starting good. Dr. Garon came by before the meeting and She was able to bend her knee and move her leg. She cant hold it but she can move it. Very good sign that the steroids are beginning to work again.

Tracey is up awaken about every hour to use the bed pan. The rest of the time there seem to be nurses doing something every 15 minutes. I don't think she is getting any sleep. They added Soy Fat Protein as a part of her TPN.

Today all she has is radiation at 2:45. I hope she can get some rest.

I will be leaving this morning after the meeting. I have to be at work for a meeting I have been working on putting together for 3 years

Should be a relaxing day for Tracey and a stressful one for me.

Tracey is sleeping well. Debbie got me something to sleep on so I am going to call it a night.

Tracey's status has stayed about the same no real improvements and no real set backs.

Hope tomorrow we have lots of improvements.

New Issue...

After Tracey uses the bedpan she starts shaking. very similar to muscle spasm, but everywhere. both legs torso even her teeth start chattering. It scares her really really bad, Tracey notified the nurses... it was change over so both the morning and night nurses came in. they said they would notify the doctor.

I am starting to feel like the black sheep. Some people have stopped looking me in the eye. I dont know if they just don't know how to handle this terrible situation or they are mad because I contacted administration.. don't know. just weird.

I dont think i mentioned earlier that I had ad hoc meeting with both Dr. Garon (while I was holding my cheese burger and fries - don't tell trace - and Dr. Tabsh (in the hallway) both were very informative. Today I saw Dr. Tabsh in a new light. I have always known that he is a very talented OB but today for the first time he reviled his compassionate side. I think he is also starting to get angry at this situation and frustrated that he cant fix it.... yet

I have haven't really giving an update on Tracey current status in a while

Tracey is on all IV medications and Nutrition. She is currently using a PCA filled with Dilaudid for pain. The PCA allows her to decide when she needs the dilaudid and how often. She is on multiple anti-nausea meds, Pepcid, Protonix (acid reflux), and Steroids.

Tracey's thought and thought process are all back. She is still unable to move her right arm, hand, leg and foot. She is very sad and scared. Her hair has started to fall out... I dont think she knows yet. She is down to 129 pounds. but the baby is good at 3.1 lbs. She has asked not to see anyone. She doesn't want anyone to see her with the right side paralysis. But she is fighting and working hard to regain her strength and movement. The DVT (blood clot) is also still an open issue

There is still a possibility that she will have another MRI to recheck her brain and liver.

I met with Debbie the Floor Director. We had a long in depth conversation about the radiation appointment issue. We then went on to discuss all different aspects of Tracey's care. It was very helpful to me. I really think she is side of the good guys.

tomorrow's meeting is going to be very important to Tracey's care. We may be facing some possible harsh facts about prognosis. I had a very difficult and painful discussion with Tracey about what she wants and how she wants to live. I will carry that information into the meeting.

Okay - Getting back - communication again and again and again -

Dr. Wang and Tracey came to an agreement that Tracey would do the ultrasound before the radiation as long as she wasn't late for radiation. Dr. Wang told Tracey that the ultrasound tech would do as much as she could until transport arrived. The deceit was that when transport arrived they sent them away without tell Tracey they were here. The only way I found out was I called Radiation Oncology and asked them what was going on with transportation. The also said that they called the nurse and told her that if Tracey did get a transport now she would not be able to have treatment today. So I lost it - I went out into the hall way and asked the first nurse I came across the I need to she the Director of the Floor (Debbie). I went back to the room transport was waiting, so I call radiation oncology and ask if she could still come... she did and had treatment...

Also - Transportation left us there and didn't come back so I wheeled her back myself.

this if f ing unbelievable.... more when i get back,,,, i am blowing a gaset

Tracey is now an over an hour late for her 2:45 Radiation appointment... this one really get under my skin... the median wage for a transporter is $ 9.87 hour... can we hire a couple more.

Ultrasound was done... they didn't do it as scheduled they did it when they wanted to, before radiation. They explained it was like the cable company --- they will be there between 8 and 5... isn't that why everyone hates the cable company?

All is good with baby. Dr. Tabsh came by and did a good job of giving Tracey hope. Hope for her future with the baby. He asked her to fight. I think she needs more of that from all her doctors.

Dr. Garon came by and discussed with Tracey why the Lovenox was discontinued. He is worried that there might be a brain bleed that they didnt see on Sunday. He did a quick neuro test on her and we found out that if some starts bending her knee she can finish it.. it was a good sign. Dr. Tabsh is somewhat worried about the discontinuation of the Lovenox, he doesn't want the DVT to move and cause a PE. By the time Dr. Garon left he was thinking that he would start the lovenox back tomorrow.

The one good thing is that we are getting a lot more contact with the doctors and we are able to communicate with them... They need to work out how to communicate between them better.

When I walked into Tracey's room the nurse was struggling with her TPN iv after she increase the volume. Tracey said there has been beeping all day long. She is also getting a blood sugar test every 4 hours.

Lovenox has been DC'ed

Wow! TPA just got started - My records show that it was ordered at 6 pm on Sunday and now it 9 am Wednesday. I have asked every nurse everyday the the answer was about the same - "The pharmacy is slow", the "pharmacist is an ass", or "there is nobody here to mix it"

Nothing like letting tracey starve for 63 hours. I weighed her yesterday and the scale said 129. 3 weeks ago she was 144....

Communication... In a ad hoc meeting about testing that happened in the previous post it was decided by the Oncologist and the Ob Resident that a ultrasound would take place tomorrow after radiation (about 3). I believe Dr. Wenger was also in the room. Well wouldn't you know at 8:15 we hear a knock at the door and its a nice happy man saying "Ultrasound" I couldn't believe that there is still a total lack of a communication system. The excuse was that ultrasound shout off there phone at 5:30 so they didn't know... The problem is they need to know.... I about blew a gasket. I feel bad for him and our nurse Lisa. I am just at my end of the communication Debacles.

3 doctors in the room and nobody could stop the ultrasound....

I need to get out of here for the night...

a lot has happened in the last couple of hours. It appears that the Thursday meeting has spurred some interest to the different discipline to find out what is going on. Within 10 minutes Nureology, Oncology, and OB visited.

Nurology - Tracey has no confidence in there ability to help her. The resident that came in today could not answer any question or speak to any studies on traceys paralisys. When questioned on why it happened in the first place she first tried to blame the move. When I didnt allow that she blamed the time of year (The school year is over and residents are moveing around). I didnt accept that either. So she left.

Oncology - came by and talk to Tracey about pain and a new liver MRI. Tracey will entertain the idea on Thursday

Ob - Wants a current ultrasound of the baby to measure and see it progress. The team offered to have the Ultrasound people come to her room. Which will happen tomorrow afternoon.

Neil Wenger - who is an Internist and a member of the ethics committee. I think he is being used as some one from the outside looking in. We spoke at length about areas in which I perceived as problematic in the system. Using the specifics of Tracey's case as examples. He really helped give me a voice to my concerns.

Mr. Padilla (director of patient services) came by again and told me that another Dr. I dont recall his name but he is on the Ethics committee has been assisting in getting all the disiplines together and he will stop by tonight and talk to me about some issues.

If Mr. Padilla is reading this the social workers are Betty Signh and Marcy Ghin (i think its hard to read)

Tracey is back from radiation. A few transport issues, but nothing major... other then being late. Radiation does a good job of adjusting.

The multi discipline meeting has been postponed until Thursday due to many Scheduling issues. I think that is Okay. it allows everyone the ability to prepare and research. The more information everyone has the better the care plan.

Tracey s pain is managed again now that she is on the PCA. She really thinks that the paralysis is permanent. If she doesn't gain the use back soon, it is going to get really bad.

Here are some quick bullet point of issues - Let me know what I have missed.

Objective

• Set Short and Long Term Goals
• Set Milestones
• Determine Pre-Requisites
• Set Commutation Standards and Responsibilities

Open Issues Tracey:

1. Inability to take Oral Meds due to Regurgitation.
2. Right Side Paralysis.
3. Lack of Cognitive Thinking.
4. Lack of Nutrition
5. Pain Management
6. Non-Treatment of Metastasis other then Brain
7. Unknown effects on the baby
8. Mental Health
9. Bowel Movements and Intestinal Villi
10. DVT
11. Multi Discipline communication
12. Continuity of Care – too many dr.’s rotating out.
13. Physical therapy
14. Increased Edema in the brain

Dr. Stein stopped by and did a quick ultrasound. She said the baby looks good.

Tracey's transport for Radiation was to be here at 1:45 for her 2:00 appointment. They are 5 minutes late. Tracey gets very stressed when they are late. It doesn't seem that that hard of an order. I can be late everyday and keep my job.

I am working on a list of open issues. I know I cant think of all of them, so please email me or comment any issues you think need to be addressed at the multi discipline meeting.

Tracey is resting. Kelly (nurse) just told us that today's plan for radiation is that she will be going with us to make sure there is no disruption in Tracey's meds or care.

The nurse tried to do the Fetal Heart Tones, but Tracey just broke down in tears. The nurse is going to try again later.

1 mg Kytril IV

Diane just told me that Dr. Tabsh called and there is a multi discipline meeting tomorrow.

Its a miracle - the pharmacy found that they do have Kytril IV... I thought we told them that 4 days ago. Tracey was on it for a week before a nurse told her that the pharmacy only had it oral and they have never had it IV.

I think its getting better - I mean the desire of UCLA to work with Tracey on her treatment is getting better. I think it is just the quality of the nurse. So understand the red tape some don't.

I just meet with the Tony Padilla Director of Patients Services. We discussed the need of all the disciplines to find a way to communicate so one discipline does not counter act the other. We also discussed the need to have an updated multi discipline meeting which should result in short and long term goals and milestones.

I spoke about my detestation for the Pain team and there utter failure. I also mentioned the Adivan issue, steroids, and a host of others. Also, I wanted to be clear that we are happy with the team (with the exception of pain) its just that they are not working as a team. They can not be focused on just there discipline.

I mentioned to Mr. Padilla that I am worried about retribution. I don't want my concerns to interfere with Tracey s health care.

The new nurse Kelly did get the blood drawn from the Red Line. Also she cleared the Purple Line just by changing the cap. I am tired of some of the staff that just wants the easiest way to get something done. I understand that to them this is just a job like mine and the easist way helps get the job done. Its not whats best for the company or customer. but I don't work in health care. If I take the easy way out because I am lazy, my work suffers and my boss gets mad at me. If they do people die. I don't want Tracey and the baby's life to be in jeopardy because someone wants to go home.

Okay, spoke with Dr. Stein and she completely disagrees with Pain. she doesn't believe there is any reason to involve GI. Dr. Stein thinks that the lack of digestion is a direct result of the meds.

The new pain team came in... they did nothing. I think that is standard practice. They did tell us that the GI doctors should get involved but they aren't going to tell anyone or write any notes. It up to us to tell dr. Stein to ask the GI doctors to get involved.

Tracey only used the PCA 6 times. This mornings nurse, Kelly, has been extremely helpful. I am hoping for a good day for both Tracey and UCLA

Sunday night at 6:30 Dr. Tabsh ordered TPN it is now 32 hours later and they still cant get it mixed... So we are now going on day 6 or 7 of no nutrition.

We now have a new nurse. I dont know if i scared the last one off, but I am happy she is gone.

Blood Draw is not going well. the nurse can not pull back blood from the PICC. I dont understand how they can give her meds and fluids on a line but not pull blood. The nurse contacted the blood lab and sent down a team to stick her to get the blood. I refused. There is no reason to stick Tracey or cause any more pain because they are lazy. What really got me going is the nurse that was unable to get blood from the PICC just walked out and didn't tell us anything - 5 minutes later 2 people we have never seen walk in saying we are going to draw the blood... wouldn't the right way to handle this be the Nurse tell us what she was going to do and they come back with the blood lab people... It seems like its a lot of laziness.

Up for morning blood draw. Dr. Stein came in and confirmed that she has been removed from all Oral Meds.

well Tracey is sleeping but I am still up. There is nowhere for me to sleep in this room at the modern UCLA Ronald Reagan Hospital. I am going to sleep on the floor.

I emailed the Hospital CEO. I want to know how we can get some focus to Tracey's case. In the last 2 days we have lost all the progress we made in the past 4 weeks. It seems that every weekend we step back, maybe because the weekend Dr.'s don't have any history with the cases.

I don't know just a guess

Nurse Tina just showed up for vitals. Her blood pressure is up a little the last two times.

Tracey spent the last 40 minutes trying to get comfortable. She is still struggling but I think she is close. The only problem is I am expecting the nurse in 5 minutes. That sucks. Tracey just told me that if she wakes up just as paralyzed as she is now she is going to be really upset. She understands that she should not be this way she had a plan of care that was agreed upon and it was changed because multi discipline team is not consulting with each other. Oncology and Radiation have got to be a part of the mix.

Fluids are here! Almost 35 minutes

Still no fluids....

IV Fluid bag empty. alarm going off. Called nurse she told me it shouldn't be more then 15 minutes. I have been in the hospital going on my 6th week. This is the first time the Tracey has had to wait to keep fluids running. Again the new Ronald Reagan hospital is not living up to its hype.

Tracey is sleeping again. She still hasn't used her PCA. This pain issue is hard to figure out. Tracey is still confused a lot. She is having a hard time differentiating between thoughts and reality. She also is mixing up her words. All of the doctors have said that this is a temporary issue. I am praying that they are right. Words are Tracey's favorite thing.

I am really beginning to miss our nights together at home laughing and watching stupid tv, making her breakfast and watching her put some type of sugar on everything. I need her to come home soon.

Tracey took her nightly ant-acid and anti-depressant and vomited them up immediately. This pattern has happened 3 of the last 4 med cycles. I have had her removed from all oral meds until she can get some food in her stomach. The hospital doesn't have the anti-depressant IV but I think the vomiting is causing more depression then the pills can help.

Tracey is still sleeping uninterrupted. I hope we are on the right path to her feeling better. Diane is also asleep....

Tracey has not yet used her PCA but she is sleeping soundly. Tracey has still not eaten its been 4 or 5 days now. They will start her on IV nutrition tonight. The babies Fetal Heart tones are good. Last ultrasound she was right where she should be. She is in there fighting with Tracey.

Tracey has started the PCA Dilaudid pump. I know Clyde wants to know how much and how often so .5 mg every 8 minutes up to 3.5 mg hr.

I dont know where to begin...

Transport is ridiculous. they were a hour and a half late to pick Tracey up for radiation treatment. Then tried to blame Tracey because they wanted to get her an hour and a half early but she wasn't ready. Then Radiation was mad that she was on a gurney and not in a wheelchair. Their elevator doesn't accommodate a gurney. I had to explain to them that it was tracey's dr. that ordered the gurney because of the DVT. And of course I explained in the nicest possible way..... Today has been a bad day for my temper..

The Radiation Oncologist told me that the right side weakness will subside as steroids take affect. They also told me that she should have never been taken off of the Steroids - I heard the Dr's talk about the notes saying "its in my notes and Dr. Garons notes that she should remain on the steroid treatment, why did neurology DC them?" Again the well organized multi discipline UCLA machine strikes again.

After radiation Tracey's pain grew to an 8 and as we arrived back at the room Dr. Garon was there. Tracey discussed the pain with him and then he met with Dr. Stein. They came back together and basically told Tracey that the first thing they need to do is get her back to where she was on Thursday. So, Dr. Stein ordered the PCA pump of Dilaudid. She is being removed from all Oral meds. Also, starting tomorrow she will become a part of the resident Oncologist rounds.

I know there is a lot of information here so I am going to open up the Comment Section for questions.

still waiting for transport to

still waiting for transport to take tracey to radiation. They are over an hour late. And tracey is now over a half hour late for her appointment.

UCLA Ronald Reagan Hospital.... looks good but not 100 up. - no wireless network. cafeteria lines are similar to ones at Disneyland. Parking (valet only) is $13 a day for one entry. $25 if you want in and out for 24 hours. The design of the LND and postpartum doesn't work. every time a baby is moved from LND to Postpartum it must pass though the elevator lobby which then sets off an alarm and shuts down the elevators. its great to stop babies from being kidnapped, but it stops the whole operation. I sat waiting in the elevator lobby for 10 minutes waiting for the alarm to clear. Which it never did. nobody new how to reset the alarm. and nobody responded to the alarm. i ended up walking to the employee only elevator.

Cant wait to see how she gets to Radiation. I was reading this morning that there are 27 miles of hallway in this hospital. I sure we will be lost in most of them on our way to radiation.

anyway lots of kinks to work out - I just wish they weren't working them out while tracey needs focused and un-distracted medical care.

The address to Ronald Reagan UCLA Medical Center:

Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, Ca 90095

She is admitted under Tracey Tressler - I would give you a room number and phone number but they just told us they were going to move her within the next hour.

Tracey is not progressing as well as i had expected. She does sound better. her speech is about 80%. the steroids don't seem to be helping with then nausea or the brain swelling yet. they are giving the dexamethasine (4 mg) iv drip and not iv push like last time. I don't know if it makes a difference or not... Tracey is complaining of a Regurgitation issue where she is constantly belching and she cant eat, take pill, or drink. That is why they are giving her the Pepcid but I don't know if that will help. Tracey's right side is still really week and she has very little ability to use her right arm and hand. It makes her very upset every time she tries to use it.

She will be going down to radiation this afternoon. She is upset that she will not be able to walk to the table as she has for the past 5 sessions.

Tracey took her meds this morning. Diane said that she didn't get any sleep because she was interrupted by doctors and nurses all night. I have not been to the hospital yet today. I am trying to figure out all the medical bills. Insurance companies don't make it easy. I have been on hold with Blue Cross for12 minutes and counting.

I'm not at the hospital so I was looking at pics. This one made me smile. Last week...

100 mg oxycontin @ 9

100 mg oxycontin @ 9
30 mg oxycodone @ 8
steriods @ 9

I have left the hospital.

I have left the hospital. Diane is in charge tonight

how long does it take

how long does it take to get pepcid? We have been waiting an hour. The UCLA well oiled machine

traceys view

new room new view. From traceys room you look right doen the heart of westwood

After reviewing the blog I

After reviewing the blog I notice among the spelling and syntax I errors I omitted the fact that the Heprin for the DVT has been restarted

tracey is resting. The half

tracey is resting. The half life of adivan is 16 to 20 hours so she still has a while to go before she feels better.

the hospital has no food.

the hospital has no food. They tryed to serve tracey yogurt and cereal - $1 Billion and they didn't expect anyone to be lactose intolerant

the current theory on the

the current theory on the disorientation is over medicated with adavan. She is coming back slowly. She will have motor skill issues for 2 weeksm

around 3 am the dr.

around 3 am the dr. Came and told me the results of the MRI were good. No bleed. Just swelling due to radiation which is tempory.

The ICU team came down

The ICU team came down as did the nuro team. There was some fear that one one of the lesions was bleeding. They dc'ed heprin and sent her 4 MRI

last night at 9 tracey

last night at 9 tracey begain getting very disoriented and was very week on her right side. She was unable to communicate and not responding

tracey sleeping in her new hospital room. She is the first person ever to be in 'LND 1 at the new UCLA ronald reagan hospital

Tracey had 30 mg oxcontin

Tracey had 30 mg oxcontin 5:30 am

sorry. I am posting from

sorry. I am posting from my phone. I can't fix any typos.

-- night was really bad.

--
night was really bad. Getting better. She has moved. Room 5633 new ronald regan

t really bad night but

t
really bad night but getting better. She is being trasported to new hospital

tracey is now on all iv meds including adavan. she is have really bad heart burn. she is not talking coherently. i am getting worried

i left my laptop home so i am using traceys kindle to blog. tracey just vomited. she is not havind a good night. she has lost some strength on her right side. she will be having a mri before the night is over

Diane has arrived at the hospital.

Diane has landed and on her way to the apartment.

todays plan:

Finish packing Traceys hospital room.
move all flowers and anything she doesnt need from 10pm tonight and 3 pm tomorrow to the apt.
Prepare her personal stuff for the move to the new hospital.

I am going to hand the care taker roll over to Diane for a couple of hours today while I head home and do some laundry and refresh. I think tracey has a good handle on what she needs and when she needs them.

Pain 4

30 mg Oxycodone

Tracey ate a little Cream of Wheat with salt and brown sugar.

Tracey is up and feeling a little disoriented. She thinks she is just drugged up.

Pain 1, Nausea 0

30 mg Oxycodone - Blood draw for other labs

Blood Draw to check for heprin level

30 mg Oxycodone

Nurse Wendy is changing traceys PICC Dressing

Tracey has not had a meal in 3 days...

Pain 5, nausea 2

30 mg oxycodone

Pain 6

100 mg Oxycontin and vitals

pain 6

Tracey is worried about having to sleep on her back. It the worse position for her back pain. She is thinking that the pain meds will be strong enough to mask it.

Pain 6

Sorry so few blogs today. I was working and when I got the call about the clot there was a lot going on so I had to get caught up.

Tracey is resting with her legs elevated, she started heprin iv. She will be on that for at least 24 hours and bed rest. she will be in the hospital at least a week.

Sunday is the move to the new UCLA Ronald Regan Hospital. So tomorrow we have to finish clearing out her room.

Tracey's pain seems to be more controlled.

I picked up dinner for her but she is feeling a bit nauseated. Kytril is on the way.

Christy and Alexa stopped by and help pack up the room. We even moved a car load to the apartment. They have been a great help.

hospital now has Kytril oral... this is her first dose...

Pain 6 nausea 3