Wednesday, March 18, 2009
Sunday, October 19, 2008
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.
Friday, October 17, 2008
Thursday, October 16, 2008
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.
Sunday, October 12, 2008
Saturday, October 11, 2008
Clyde3/Ed -Tracey's brother
View Larger Map
Friday, October 10, 2008
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.
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.
Thursday, October 9, 2008
Thanks for the debate - I will update everyone one today's meeting later.
Bella has an ultrasound this morning.
Wednesday, October 8, 2008
My issue with hospice is that I dont know what they would do to help Tracey. Can someone tell me?
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.
Monday, October 6, 2008
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.
Sunday, October 5, 2008
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.
Saturday, October 4, 2008
Monday, September 29, 2008
Sunday, September 28, 2008
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.
Saturday, September 27, 2008
Friday, September 26, 2008
Wednesday, September 24, 2008
Monday, September 22, 2008
Sunday, September 21, 2008
Friday, September 19, 2008
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.
Thursday, September 18, 2008
Wednesday, September 17, 2008
Federal Reserve to rescue AIG in $85-billion finance plan
Cancer Research only gets 4.7-billionI 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.
Tuesday, September 16, 2008
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.
Monday, September 15, 2008
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.
Sunday, September 14, 2008
Thursday, September 11, 2008
Monday, September 8, 2008
Sunday, September 7, 2008
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, September 5, 2008
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, September 3, 2008
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.
Monday, September 1, 2008
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.
Monday, August 25, 2008
Thursday, August 21, 2008
Saturday, August 16, 2008
Thursday, August 14, 2008
If you can not see the "family Photos" link let me know and I will put it somewhere else on the page.
Wednesday, August 13, 2008
Tuesday, August 12, 2008
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.
Friday, August 8, 2008
Thursday, August 7, 2008
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.
Tuesday, August 5, 2008
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.
Monday, August 4, 2008
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.
Sunday, August 3, 2008
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.
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.
Saturday, August 2, 2008
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.
Wednesday, July 30, 2008
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.
Monday, July 28, 2008
Sunday, July 27, 2008
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)
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.
Saturday, July 26, 2008
Friday, July 25, 2008
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.
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....
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.
Thursday, July 24, 2008
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.
Wednesday, July 23, 2008
Tuesday, July 22, 2008
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.
Monday, July 21, 2008
Saturday, July 19, 2008
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.
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.
Dr. Shaw is contacting Dr. Tabsh.
Friday, July 18, 2008
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.
Tuesday, July 15, 2008
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..
Monday, July 14, 2008
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.
Sunday, July 13, 2008
Saturday, July 12, 2008
Friday, July 11, 2008
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 -
Thursday, July 10, 2008
Tracey wants to veg out and watch tv tonight. Diane is out shopping.
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.
Tuesday, July 8, 2008
Alexa and Christy are coming by tonight. Tracey is looking forward to talking to them.
Monday, July 7, 2008
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....
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...
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.
Sunday, July 6, 2008
Tracey and I have had some good conversations in the past couple of days. She wants to try and tell me a story tonight.
Saturday, July 5, 2008
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.
Friday, July 4, 2008
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.
Thursday, July 3, 2008
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.
Wednesday, July 2, 2008
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
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.
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.
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.
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.
Nothing like letting tracey starve for 63 hours. I weighed her yesterday and the scale said 129. 3 weeks ago she was 144....
Tuesday, July 1, 2008
3 doctors in the room and nobody could stop the ultrasound....
I need to get out of here for the night...
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.
If Mr. Padilla is reading this the social workers are Betty Signh and Marcy Ghin (i think its hard to read)
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.
- Set Short and Long Term Goals
- Set Milestones
- Determine Pre-Requisites
- Set Commutation Standards and Responsibilities
Open Issues Tracey:
- Inability to take Oral Meds due to Regurgitation.
- Right Side Paralysis.
- Lack of Cognitive Thinking.
- Lack of Nutrition
- Pain Management
- Non-Treatment of Metastasis other then Brain
- Unknown effects on the baby
- Mental Health
- Bowel Movements and Intestinal Villi
- Multi Discipline communication
- Continuity of Care – too many dr.’s rotating out.
- Physical therapy
- Increased Edema in the brain
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 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.
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
Monday, June 30, 2008
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.
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.
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.
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.
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.
Sunday, June 29, 2008
Saturday, June 28, 2008
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.
Friday, June 27, 2008
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