Tracey Status

2009-03-18T20:42:00.000-07:00

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

2008-10-19T19:29:00.000-07:00

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.

2008-10-17T14:21:00.000-07:00

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..........

2008-10-16T19:37:00.000-07:00

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.

2008-10-12T22:18:00.000-07:00

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

2008-10-12T06:52:00.000-07:00

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

2008-10-11T13:47:00.000-07:00

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

2008-10-10T14:24:00.000-07:00

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

2008-10-10T13:40:00.000-07:00

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

2008-10-10T05:59:00.000-07:00

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.

2008-10-09T07:20:00.000-07:00

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.

2008-10-08T15:01:00.000-07:00

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?

2008-10-08T12:41:00.000-07:00

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.

2008-10-08T07:02:00.000-07:00

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.

2008-10-06T09:35:00.000-07:00

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.

2008-10-05T07:19:00.000-07:00

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.

2008-10-04T22:41:00.001-07:00

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

2008-09-30T21:12:00.000-07:00

2008-09-29T09:50:00.000-07:00

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

2008-09-28T20:24:00.000-07:00

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.

2008-09-27T10:37:00.000-07:00

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

2008-09-26T16:41:00.000-07:00

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.

2008-09-24T20:27:00.000-07:00

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.

2008-09-22T19:13:00.000-07:00

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

2008-09-21T08:40:00.000-07:00

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

2008-09-19T20:57:00.000-07:00

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

2008-09-19T11:00:00.000-07:00

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

2008-09-18T11:20:00.000-07:00

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

2008-09-18T10:45:00.000-07:00

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

2008-09-17T13:49:00.000-07:00

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....

2008-09-17T07:59:00.000-07:00

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

2008-09-16T16:36:00.000-07:00

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.

2008-09-15T23:07:00.000-07:00

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.

2008-09-14T13:25:00.000-07:00

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.

2008-09-12T00:28:00.000-07:00

Pictures of Dianes 66th birthday

2008-09-11T17:15:00.000-07:00

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)

2008-09-08T19:37:00.000-07:00

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)

2008-09-07T11:40:00.001-07:00

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)

2008-09-05T16:25:00.001-07:00

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)

2008-09-03T16:29:00.001-07:00

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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2008-09-01T14:23:00.000-07:00

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.

2008-08-25T21:30:00.000-07:00

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.

2008-08-21T17:12:00.001-07:00

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.

2008-08-16T09:06:00.000-07:00

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.

2008-08-14T16:25:00.001-07:00

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.

2008-08-14T08:34:00.001-07:00

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

2008-08-13T16:56:00.001-07:00

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

Thanks to everyone that made this possible.

2008-08-12T16:50:00.001-07:00

2008-08-12T15:08:00.000-07:00

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

2008-08-08T20:10:00.002-07:00

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

tracey is resting and watching

2008-08-08T20:10:00.001-07:00

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

2008-08-08T08:58:00.000-07:00

Tracey is moving to the apartment today.

2008-08-07T09:14:00.001-07:00

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.

2008-08-05T20:30:00.001-07:00

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.

2008-08-05T11:58:00.000-07:00

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

2008-08-05T10:42:00.001-07:00

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

2008-08-04T23:48:00.000-07:00

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.

2008-08-03T20:49:00.000-07:00

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.

2008-08-03T08:26:00.000-07:00

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.

2008-08-02T22:25:00.000-07:00

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

2008-08-02T10:27:00.001-07:00

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.

2008-07-30T23:04:00.001-07:00

2008-07-30T17:29:00.000-07:00

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.

2008-07-28T22:08:00.000-07:00

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

2008-07-28T17:39:00.000-07:00

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)

2008-07-27T23:35:00.000-07:00

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.

2008-07-27T18:12:00.000-07:00

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)

2008-07-27T00:22:00.001-07:00

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.

2008-07-26T17:47:00.001-07:00

Mommy and Bella

2008-07-26T14:12:00.000-07:00

and the name is...

Bella Tracey De Libro

Thanks for all the help

2008-07-25T21:33:00.000-07:00

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.

2008-07-25T03:57:00.001-07:00

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

2008-07-25T01:32:00.000-07:00

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.

2008-07-25T01:14:00.001-07:00

Baby is here... Doc just

2008-07-25T00:00:00.001-07:00

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

Tracey is in the OR

2008-07-24T23:26:00.001-07:00

Tracey is in the OR

tracey is in pre op.

2008-07-24T22:53:00.001-07:00

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

They are getting tracey ready

2008-07-24T21:58:00.001-07:00

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

They are getting tracey ready

2008-07-24T21:57:00.001-07:00

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

2008-07-24T21:02:00.001-07:00

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

water broke baby coming... We

2008-07-24T19:14:00.001-07:00

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

2008-07-24T15:03:00.000-07:00

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.

2008-07-24T13:26:00.000-07:00

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

2008-07-23T09:22:00.000-07:00

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.

2008-07-22T22:19:00.000-07:00

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.

2008-07-21T17:18:00.000-07:00

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.

2008-07-19T12:24:00.000-07:00

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.

2008-07-19T09:04:00.000-07:00

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.

2008-07-19T03:08:00.000-07:00

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

2008-07-19T02:40:00.001-07:00

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

2008-07-19T02:27:00.000-07:00

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.

2008-07-19T02:07:00.000-07:00

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

2008-07-19T01:41:00.000-07:00

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

2008-07-19T01:12:00.000-07:00

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

Pain 9

2008-07-19T00:42:00.000-07:00

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

2008-07-19T00:31:00.000-07:00

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

2008-07-19T00:24:00.000-07:00

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

2008-07-19T00:14:00.000-07:00

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.

2008-07-18T23:49:00.000-07:00

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

2008-07-18T23:37:00.000-07:00

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

Pain 8