A picture from Kathy Kamka
posted by Lisa @ 9:20 PM
Wednesday, March 26, 2008
Tuesday, October 16, 2007
A Message from Claudia Omodei Zorini
I send the best wishes to Tina, she will be fine! A big kiss and all my
prayers.
Love,
Claudia
posted by Lisa @ 8:01 AM
Monday, October 15, 2007
Oct. 15th Update
Aloha everyone,
People have emailed and called wanting an update – but I’ve been very busy for the past six months with issues regarding Tina. So, I have been very frustrated and exhausted from dealing with one issue in particular and dealing with Medi-Cal and Social Security. Since June I had to write, fax, mail or telephone 19 times just to get her Medi-Cal and S.S. on the same page and it is still not in order. It is mind boggling – how do people do it when they are older and sick? The most frustrating thing was on two occasions Medi-Cal sent me an envelope that they personally addressed to themselves and they lost it – twice!!!! And then I got notices that I’m in default for not returning the packets!! Lot of wasted time.
Many of you know of my creative, artistic endeavors and just when I’m about to take off on a project something happens with an issue of Tina’s business that is more urgent and I have to put my life on hold or I get side stepped. I feel like my life or my goals keep getting interrupted and then it is hard to jump back on track. Tina knows this and she is always very appreciative of what I do for her. I was finally able to get this update out - this weekend was my first weekend to relax in six months.
People have emailed and called wanting an update – but I’ve been very busy for the past six months with issues regarding Tina. So, I have been very frustrated and exhausted from dealing with one issue in particular and dealing with Medi-Cal and Social Security. Since June I had to write, fax, mail or telephone 19 times just to get her Medi-Cal and S.S. on the same page and it is still not in order. It is mind boggling – how do people do it when they are older and sick? The most frustrating thing was on two occasions Medi-Cal sent me an envelope that they personally addressed to themselves and they lost it – twice!!!! And then I got notices that I’m in default for not returning the packets!! Lot of wasted time.
Many of you know of my creative, artistic endeavors and just when I’m about to take off on a project something happens with an issue of Tina’s business that is more urgent and I have to put my life on hold or I get side stepped. I feel like my life or my goals keep getting interrupted and then it is hard to jump back on track. Tina knows this and she is always very appreciative of what I do for her. I was finally able to get this update out - this weekend was my first weekend to relax in six months.
I’m just going from my notes of the highlights of what this situation entails for Tina and myself. For the most part Tina has been stable and making baby steps towards progress. Keep in mind that the notes go back a few months.
6/11/07 I saw one of Tina’s nurses (they’ve become very close friends) in the hallway and she said Tina is putting a guilt trip on her – I told her, “Welcome to the family.” I was there for a Care Plan meeting with the Country Villa staff. Dwayne, the Respiratory Supervisor said Tina is withdrawing and sleepy, but the staff knows when she is pretending to be asleep. I told them that Tina is a very sweet person, but sometimes can be that bratty little sister, even though she’s 37. I vented my frustration with her acting like a baby and told them that a few days before I told Tina it was unacceptable for her to act like a baby around me. I’m not her mom, I’m her sister and I’m not going to treat her like a baby. I felt bad having to tell her in the first place, but she responded positively.
After the Care Plan meeting I went to visit Tina and told her, “You are so busted!” Tina said “Why?” I told her, “Because they know when you are pretending to be asleep.” We had a good laugh at that.
7/26/07 Tina said the Dr. Chung said the goal is for her to be off respirator in a few months, and for the trach to be closed up!!!!!
8/10/07 Today Tina ate a sampling of pureed yogurt, ice cream, mashed potatoes. Soon she will be eating one meal a day.
8/20/07 I met with Tina's speech therapist, Adrian, Tina's tongue is stiff that is why she can't swallow thin liquids. Adrian is so unbelievably beautiful. She’s a traveling Speech Therapist and will only be here a few months. Tina and Adrian seem to really hit it off.
8/28/07 I received a small check from the Probation Dept., so I called them inquiring when the guy who hit Tina got out of jail. The Probation Officer said he got out 3 months ago. I asked if the check was weekly or a monthly, she said, “Monthly”.
I told the P.O. that to me that small amount didn’t “hurt” him that much, it should at least be the amount of a car payment. And if he paid that amount in the five years of his probation (after the five years he wouldn’t have to pay anything) so the amount he actually pays from the amount of the bill we gave them at his surrender hearing is 1/6th of the total.
The P.O. said, “That’s right.”
I told her, “It took me a week to get the details of that bill together and the bill amount is still nothing compared to her expenses.”
The P.O. said, “You have to understand that he is a food service worker and that is all he can afford.”
“And you have to understand that he left my sister to die because he was so chicken and only cared about himself!”
This news was a slap in the face to me. I was so upset that I couldn’t even tell Tina that night. I told her the next night and she cried and cried.
9/20/07 Dwayne, the Respiratory Supervisor called and said Tina asked him to call me. He said she didn’t want me to be surprised when I heard her voice. They put a cap on her trach and I would be able to hear her voice more strong and the sound actually coming out of her mouth instead of the Passi Muir Valve in her throat and Tina can hear herself better. I got the call at work and I had to have a moment and cry. So many times in the past 17 months I’ve received calls with bad news and here was another baby step in Tina’s progress. When I went to see Tina that night it seemed that with the cap in and the sound coming from her mouth she was talking like normal (the sound is still very small) but I noticed that she was trying to move her arms a little more when she talked. Any of you who know me, know how my arms and hands fly around when I talk!
9/24/07 Tina began eating a pureed lunch - this is her first full meal in 15 months! In a few weeks they will add a pureed breakfast.
Sometimes Tina’s leg reflex. She is moving her right arm with more ease. Her spirits have been up since that whole “acting like a baby sister” incident. She is getting stronger and more determined to walk out of the hospital. She wanted me to buy her some sneakers because one of the Respiratory Techs, Khring, said that they could help her feet. I bought her some black Van types with pink and white flowers and polka dots. Now all the staff want a pair!
Some of the staff at Country Villa have become like family, and who are Tina’s cheerleaders, I’d like to thank in particular DeeDee, Dwayne, Khring, Lucinda, Sheila, Cherie, Adrian (who is now off to another hospital in No. California – Tina misses you!).
A goal they have for her now is to be able to move her right arm so she can feed herself. Last week I told her, “Tina, I’ll put some chocolate on your finger and you can try to get it to your mouth.” Tina said, “No, peanut butter.” I told her, “Hey, maybe you can have your own, ‘Got Milk’ commercial”. We couldn’t stop laughing and laughed so hard that the other patients and their visitors just started laughing and didn’t even know what we were laughing at.
Please if you visit, do not bring her any food – she can only eat pureed foods and then she needs some liquids to wash it down and it is milk or water with a thickner (yuk!) – my brother, Joey, made her some of his famous carrot cake (without nuts and coconut) and we had a heck of a time finding something to help wash it down since he didn’t bring his own milk and we didn’t know about the thickner. Major pain in the butt. So, if you want to bring her something, Bath and Body Works sprays, lotions, bathing gels, that type of stuff – and I buy spray just for me when I go visit to spray in the room – after 17 months of a stinky nursing home, some days, it takes so much for me to walk into those smells – yeah I’d make a crappy nurse.
Tina has been having flashbacks of the accident recently, she just gets little bits of flashes but she remembers lights and lots of glass.
In case you want to stop by and say hi to Tina here is the address:
Country Villa - Room 7C (go to the right wing)
1730 Grand Ave. (off PCH, just East of Termino)
Long Beach
6/11/07 I saw one of Tina’s nurses (they’ve become very close friends) in the hallway and she said Tina is putting a guilt trip on her – I told her, “Welcome to the family.” I was there for a Care Plan meeting with the Country Villa staff. Dwayne, the Respiratory Supervisor said Tina is withdrawing and sleepy, but the staff knows when she is pretending to be asleep. I told them that Tina is a very sweet person, but sometimes can be that bratty little sister, even though she’s 37. I vented my frustration with her acting like a baby and told them that a few days before I told Tina it was unacceptable for her to act like a baby around me. I’m not her mom, I’m her sister and I’m not going to treat her like a baby. I felt bad having to tell her in the first place, but she responded positively.
After the Care Plan meeting I went to visit Tina and told her, “You are so busted!” Tina said “Why?” I told her, “Because they know when you are pretending to be asleep.” We had a good laugh at that.
7/26/07 Tina said the Dr. Chung said the goal is for her to be off respirator in a few months, and for the trach to be closed up!!!!!
8/10/07 Today Tina ate a sampling of pureed yogurt, ice cream, mashed potatoes. Soon she will be eating one meal a day.
8/20/07 I met with Tina's speech therapist, Adrian, Tina's tongue is stiff that is why she can't swallow thin liquids. Adrian is so unbelievably beautiful. She’s a traveling Speech Therapist and will only be here a few months. Tina and Adrian seem to really hit it off.
8/28/07 I received a small check from the Probation Dept., so I called them inquiring when the guy who hit Tina got out of jail. The Probation Officer said he got out 3 months ago. I asked if the check was weekly or a monthly, she said, “Monthly”.
I told the P.O. that to me that small amount didn’t “hurt” him that much, it should at least be the amount of a car payment. And if he paid that amount in the five years of his probation (after the five years he wouldn’t have to pay anything) so the amount he actually pays from the amount of the bill we gave them at his surrender hearing is 1/6th of the total.
The P.O. said, “That’s right.”
I told her, “It took me a week to get the details of that bill together and the bill amount is still nothing compared to her expenses.”
The P.O. said, “You have to understand that he is a food service worker and that is all he can afford.”
“And you have to understand that he left my sister to die because he was so chicken and only cared about himself!”
This news was a slap in the face to me. I was so upset that I couldn’t even tell Tina that night. I told her the next night and she cried and cried.
9/20/07 Dwayne, the Respiratory Supervisor called and said Tina asked him to call me. He said she didn’t want me to be surprised when I heard her voice. They put a cap on her trach and I would be able to hear her voice more strong and the sound actually coming out of her mouth instead of the Passi Muir Valve in her throat and Tina can hear herself better. I got the call at work and I had to have a moment and cry. So many times in the past 17 months I’ve received calls with bad news and here was another baby step in Tina’s progress. When I went to see Tina that night it seemed that with the cap in and the sound coming from her mouth she was talking like normal (the sound is still very small) but I noticed that she was trying to move her arms a little more when she talked. Any of you who know me, know how my arms and hands fly around when I talk!
9/24/07 Tina began eating a pureed lunch - this is her first full meal in 15 months! In a few weeks they will add a pureed breakfast.
Sometimes Tina’s leg reflex. She is moving her right arm with more ease. Her spirits have been up since that whole “acting like a baby sister” incident. She is getting stronger and more determined to walk out of the hospital. She wanted me to buy her some sneakers because one of the Respiratory Techs, Khring, said that they could help her feet. I bought her some black Van types with pink and white flowers and polka dots. Now all the staff want a pair!
Some of the staff at Country Villa have become like family, and who are Tina’s cheerleaders, I’d like to thank in particular DeeDee, Dwayne, Khring, Lucinda, Sheila, Cherie, Adrian (who is now off to another hospital in No. California – Tina misses you!).
A goal they have for her now is to be able to move her right arm so she can feed herself. Last week I told her, “Tina, I’ll put some chocolate on your finger and you can try to get it to your mouth.” Tina said, “No, peanut butter.” I told her, “Hey, maybe you can have your own, ‘Got Milk’ commercial”. We couldn’t stop laughing and laughed so hard that the other patients and their visitors just started laughing and didn’t even know what we were laughing at.
Please if you visit, do not bring her any food – she can only eat pureed foods and then she needs some liquids to wash it down and it is milk or water with a thickner (yuk!) – my brother, Joey, made her some of his famous carrot cake (without nuts and coconut) and we had a heck of a time finding something to help wash it down since he didn’t bring his own milk and we didn’t know about the thickner. Major pain in the butt. So, if you want to bring her something, Bath and Body Works sprays, lotions, bathing gels, that type of stuff – and I buy spray just for me when I go visit to spray in the room – after 17 months of a stinky nursing home, some days, it takes so much for me to walk into those smells – yeah I’d make a crappy nurse.
Tina has been having flashbacks of the accident recently, she just gets little bits of flashes but she remembers lights and lots of glass.
In case you want to stop by and say hi to Tina here is the address:
Country Villa - Room 7C (go to the right wing)
1730 Grand Ave. (off PCH, just East of Termino)
Long Beach
Here is the blog which this email will become a part of: http://www.everybodylovestina.blogspot.com/
If you would like to post a message on the blog, please send an email to my daughter Lisa at: lisaofthesea@hotmail.com
Thank you for all your prayers and good thoughts and best wishes for Tina.
Love,
Linda
posted by Lisa @ 9:56 PM
Friday, July 20, 2007
A message from Courtney
Hi Lisa. I wrote a little something for the blog if you wouldn't mind posting it. My name is Courtney, but Tina calls me Cootney. Thanks! Hope all is well with you, I loved the note that you posted from Tina recently, it was very sweet.
I met Tina when I was 18 years old and started working at Ralphs. We progressively got closer as I started working in the bakery with her at store #73. She became one of my "cool", older (not old, just older) friends who let me hang out in her apartment since I still lived with Mom and Dad. Tina cooked for me, we gossipped a lot, we caused a good amount of trouble, made idiots of ourselves, grew to know each other's families and other friends, and she took care of me at times when I was down or just needed some girl advice.
I wanted to write this message not only to explain how I know Tina and why she is so important to me, but to also tell others what she continues to do for me as she fights through all that has happened to her in the past year. I feel as though I have been very blessed with the family and friends that I have in my life. Tina is one of these people that I consider to be an influencial and loving force who guides me through my life. Even as she has been in the hospital and at Country Villa this past year, she has continued to take care of me. The strength and grace which she has demonstrated in dealing with all that has happened to her and in fighting back to be able to one day walk again have inspired me and are a constant reminder of what all of us are capable of. When I feel as though I cannot do something or I get down, I think of Tina and remind myself that if she can be as strong as she has been, so can I.
It has never felt like a chore or an inconvenience to visit Tina in the past year. Each week I depend on my visit with Tina, which leads to my visit with Karin and Becky as well. Sure there are weeks when 1 of us can't make it, or all 3 of us can't make it, but for the most part I depend on and look forward to that visit as a very special part of my week. Tina greets us with a smile each time we come in (okay there were some days when she was a little cranky, but aren't we all sometimes) and before I can say anything she mouths to me, "how are you?". She asks about my whole family, my friends, school, work....my life. She shows us her improvements in the movement of her legs and arms and points out fun things in her room that people have left for her. She truly inspires me. We have not stopped acting as goofy as we used to, we still cause a good amount of trouble at Country Villa. I walked into the door, accidentally pulled on the feeding tube in her nose, knocked the bulletin board off of her wall....some things never change between us.
I pray every day that God will watch over my friend Tina and continue to help her through all that lies ahead for all of us. Tina and I have talked about going to Cancun next summer, or visiting Kathy and Kevin, or visiting Granny Goose in Texas. We are making plans for when she is able to once again walk and join me in running into walls and making an idiot of myself as we manage to do so well together.
To Tina: I love you Boo Boo, Cootney
posted by Lisa @ 4:45 PM
Friday, July 13, 2007
Letter from Tina to niece
I have recently been scanning in old pictures to save as digital copies and I came across a scrapbook that Tina made for me for my high school graduation. She wrote a letter to me in it and I wanted to repost it here for others to read. It means the world to me and I wanted to share:
December 2001
Dear Lisa,
What does "family" mean? To me it's everyone who is in our circle. Friendships we make through life. We share words of encouragement, laughter, and to hold our head up high when tragedy occurs. Through all this we stay strong. I wish I could have the big family but we don't. But we have so many memories and stories so this book has just a glimpse of special moments in your life. I feel that if I close my eyes I can picture you with your eyes glowing and your hair in pigtails. And now you're a beautiful young woman. Words can't express how much I love each one of you. The joy you and Jessie and Derek have brought to my life is incredible. I'm grateful to have such a wonderful family.
Love, Auntie Tina
posted by Lisa @ 12:03 PM
Monday, July 02, 2007
From Kathy a.k.a. Granny Goose
(Please note: I received this e-mail from Kathy in December and I thought I had posted this blog...cleaning out my e-mail inbox today I found it and checked the blog and realized that I hadn't posted it yet. Kathy, I apologize for taking so long to post this, and we truly appreciate you taking the time to send a note and a picture. I'll read it to Tina when I visit her this week. -Lisa)
Kathy, Coot, Joanna, Tina and KarenWell here we are in December and I am thrilled to hear how well my friend Tina is doing! As you can tell we girls were very close and we liked to have fun when we all got together. This was taken at Mike's home on his birthday. We were doing shooters of that green stuff lol and we were felling no pain. I went home and these silly girls went into the hot tub. We all had such a good time I know Tina would get a kick out of this picture!
My prayers have been for Tina to get back to using her arms and legs. I know all the prayers for Tina are being heard and answered. It seems like it is taking a long time but things happen in Gods time not ours. She is a wonderful girl and we all love her so much.
I wish to thank all of my friends who are able to go spend time with Tina. Time is a gift which when given with love is priceless.
I wish to send my love to Tina's family, she loves you all so much. It has been a very difficult time for you all, I just want to send my love during the holidays. I pry this will be the best year for all of you (even Joey you nut). I so love Tina's stories about her family, especially the Joey ones lol.
Now finely Linda I am so happy to hear you are doing what I felt was important writing a book on what you are all going through. When you have a gift you should use it to help others. I know that your experience through all this may someday be very helpful to someone else which is a gift with no price tag.
Please tell Tina she is in my thoughts every single day. I pray for her every night. I ask God to post many angels around her so she will never be alone. I cannot be there but my angels are.
God Bless You All
Kathy AKA Granny Goose
posted by Lisa @ 9:14 PM
Friday, June 01, 2007
3/6-5/29 Update
Aloha everyone,
I know it has been a long time and some folks have been asking about Tina. Here is a continuation of my journal. Sorry to bore you, but it is important to keep these notes to see progress, setbacks and to let family and friends see how her spirits are on a daily basis. Some days there are no entries, because it was same old, same old.
3/1/07 Tina is still at Los Alamitos Hospital. She has been very quiet since she's been at Los Alamitos. Maybe she's depressed. To cheer her up I danced as the losers of American Idol sang but for all my efforts, she barely cracked a smile. I told Tina everything is ok, it is safe to come home (so hurry up and get better), she won't have any worries. I read Emi Mukumoto's and DeeDee Mejia's emails to her and she cried.
3/6/07 Back at Country Villa!! What a homecoming. Everyone was excited to see me when I walked in and Tina was so happy to be back. While I was there staff kept coming in to welcome her back. What a difference a day makes, she was obviously very unhappy at Los Alamitos Hospital, but now she is back to her old self.
3/13/07 I get tired of making small talk to Tina everyday, and some days she doesn't have anythying to communicate either, so I just massage her. At the end of today's massage I pretended like I was a faith healer and she was all giggles with my antics. I gotta be creative with my visits after seeing her almost every day for, as of today 288 days or almost 10 months - I don't write this for anyone to feel sorry for me, it is just to remind myself of why I'm so tired sometimes. Sometimes I get from people that I'm a saint (he he he), an angel, or their hero (yes, I've been called all 3 names) for all that I try to do for Tina - I'm none of that, I just love that little punk (my Little Tiner Weiner, that is what I've call her since she was a baby - and I've embarrassed her many times by calling her that in public).
Tina's brain stem is injuried, that is why she can't move, but her thinking brain is all there. My brain stem is fully in tact and sometimes I feel like a chicken with its head cut off, I'm physically moving but I'm so overloaded, my thinking brain just doesn't seem to work or it just wants to sleep. Most of the time I just don't have my game on like I used to. I just fly by the seat of my pants most days, some days I honestly don't know how I got from Point A to Point B.
3/14/07 Tina is tired of watching TV, she wanted to listen to the radio, so I put on a station 93.9 which has lots of dance music. Shakira was on so as I massaged her I was doing some Shakira moves and she was cracking up, but she was secretly hoping that someone would walk in on me and embarrass me - me embarrassed?
3/15/07 Tina communicated to me, with the help of the nursing supervisor Joanne, that they are going to go back to working on Tina talking and that she still has an infection at the site where the G-tube was so they are going to try to get her to talk and swallow and then eat food. Tina is all for it - she made that decision with her medical team. That is good for her, she didn't feel she needed my approval. She's tired of having the feeding tube in her abdomen and in her nose. So, what seemed to be a setback, is actually giving Tina and the team a feel for a more aggressive approach. I feel that when Tina is able to speak that could really help in her healing progress, that she'd be more independent. (When I wrote "Tina talking..." above, it reminded me of that Twilight Zone about the doll "Talky Tina" - For you TV trivia buffs, here is a web link about that episode: http://en.wikipedia.org/wiki/Living_Doll_(The_Twilight_Zone)
Bill & Dianna Veeder came to visit Tina today. On the sign in sheet I have column that asks, "Where do you know Tina from?" Bill wrote "I met her on a street corner". So when I told Tina what he wrote, she mouthed "that asshole" and we giggled. Good one Bill.
On the sign-in sheet Tim and Jack (the un-gay couple) always sign, "Tim and Jack - Heterosexuals" or something similar. Can someone spell "d-e-n-i-a-l"?
Today, my daughter Jessie wrote me an email which said, "if there truly are soulmates in this world, i think you're one of them (for me)." She made me feel all warm and fuzzy. I love my kids!!! & son-in-law & brother, Joe - with all that has gone on with Tina - a benefit of it is that my family is even more loving! When I need them, they are there.
3/17 - 18/07 Crash and burn mode - slept all weekend.
3/21/07 Today, Dwayne the Respiratory Supervisor came in with an RT he was introducing to the patients. He said, "And here we have TT (that is what he calls her) and she is doing great, she has a fighting spirit and is doing her best. Little by little she's moving her neck and her trunk and we are proud of her." Tina responded with a big smile.
4/1/07 Today as I massaged her I sang that little Mexican song that parents sing to their children when they get a boo boo: "Sana sana cola de rana..(I don't know the rest)" The translation is "heal, heal tail of a frog" - Yeah, yeah, I know it is one of the weird Mexican traditions. I know it reminded Tina of my mom and grandma.
4/6 I talked with the nursing assistant who feels Tina is not getting her hands exercized enough, Tina said her hands are cramping, and regarding Tina's toenails being cut by a podiatrist. I informed the supervisors about the situation.
4/7/07 I visited Tina with Derek. Since my talk with the nursing assistnat yesterday, I began aggresively doing range of motor exercises with Tina myself. I was afraid to handle her left arm, the arm with the big scar and the plate and screws in it but she said it was ok to move it and that it didn't hurt. Tina was so stiff, trying to raise her arm was like trying to jack up a monster truck. When I was rotating her right arm she was making a face, Derek said, "I think it hurts her." She said "No." Then she spelled "boobs". The angle I am in to massage her right arm causes her hand to rub against my boob! We just fell out laughing.
4/13/07 Friday the 13th. Today I took a walk to El Dorado Park and I guess I thought I was driving, not following to the signal for a pedestrian because I walked right in front of an SUV. It wasn't my day to die, because the SUV somehow came to a gentle stop about 10 feet away from me. I NEED A VACATION!!! Diane told me that maybe it's Post Traumatic Stress. I just know I can't get a handle on details, make this phone call, fill out this form, pay this bill, blah, blah, all Tina's details that I really don't want to deal with, but I have to, who else will? I've got my own details and I'm not dealing with those very well either. I'm just venting here. I don't know what I'd do without Diane as my sounding board or being there as someone to bounce things off of.
4/16/07 On the spur of the moment I rented a car and drove to Sedona to visit my friend Jane Ann. It was great hanging out with Jane Ann and her sister Jill. I really needed to get away. I listened to audio books and it was such a great ride. I felt better when I got back and I was only gone a few days so Tina didn't miss me that much. But, wouldn't you know, as I got off the freeway at Willow off ramp I get a call about a situation (not medically related) that I had to take care of for Tina - just goes to show you, you can't escape your problems.
5/3/07 Bill & Diana Veeder came to visit. This is what he wrote on the sign in sheet: "I met her at an Aerosmith concert - love in the elevator!" When I read to Tina, she mouthed, once again, "Asshole".
5/7/07 I'm doing a Forrest Gump. Remember when he ran across the US and then back again? I rented another car and drove to Grand Junction, CO this time. My friend MaryAnne came with me on our Thelma and Louise road trip.
5/13/07 Back from my road trip to Grand Junction, CO, to stay at my friends, Dave & Laurie Lester's bed and breakfast: www.willowpondbnb.com. Did a day at Glenwood Springs, CO at a mineral bath an hour away from Aspen. At the mineral bath MaryAnne said, a little too loud "I feel like I'm in the movie Cocoon with all these old people". We went to the Grand Junction wine country, a tour of Colorado National Monument, which is almost in Laurie's backyard. Laurie and Dave are wonderful innkeepers, their place is beautiful and she makes the best gourmet breakfasts!! I felt very well taken care of and let them spoil me! We drove back through Utah and a day in Moab (wow, what a great place!). The drive is like driving through an art museum, incredible views everywhere. About 30 miles out of Las Vegas on the 15 coming from Utah, there was an accident that shut down the 2 lane freeway for 3 hours. I know that truckers have CB radios, so I got out of the car (since it was like a parking lot) and knocked on the door of a truck and hopped up on the side to find out what was going on and then other drivers in their cars waved me down to tell them the news. Maryanne said she should have gotten a photo of me hanging on the side of the big rigs - I went to 3 different trucks to make sure I got all the news. This trip to Colorado coupled with my trip to Sedona is what I needed to get me back on track from this year of having to be sooooo responsible.
As I left Grand Junction, Laurie gave me a copy of Christopher Reeves book, "Still Me". When I started to read it I just got as far as the first paragraph of the dust jacket before I broke down crying - his accident was Memorial Day, 1995 and Tina's was Memorial Day 2006!
When I got back Tina had made some more significant improvements and I can hear her now with her Passi Muir Valve - which she uses to speak. They said she needs to practice talking more and my sister is a woman of few words (unlike me LOL) so today I took some music she likes and made her sing and told her when to take deep breaths. Dwayne, the Respiratory Supervisor was joking about it being the Nursing Home Idol! Then he told me Tina's room mate, Kathleen passed away while I was gone. Kathleen was a tiny woman ravaged by MS - but even though she didn't speak, she had quite a sense of humor and I would look out for her since I never saw any family members visiting her. The nurses would joke with her and Tina alot and hold up a mirror so they could see each other. Dwayne said that their room was known as "The Girls Room" (since they were the youngest patients) and they made jokes about "Girls Rule" but instead they would joke with Tina and Kathleen that "Girls Drool" since they are both on ventilators and need to be suctioned. My sister just cracked up at that joke and Dwayne was cracking himself up too. When I rotated Tina's left arm it went up so much higher with more ease that I could see all this hair under her armpits. I joked with her, "Tina, you have so much hair under your arms, you could braid it! She asked me for some Bath and Body Works lotions and bath gel, so I went out and bought some and I went back to shave her armpits - the things you gotta do, huh? I had started the agressive range of motion exercised on 4/7 and now on 5/13, one month and one week later she has loosened up so much and moves her left arm a little more - I used to be worried because it was very tight and she didn't move it - kind of like how stroke vicitms have their left arms and hands clenched. I rotate her fingers on her left hand and they all move ok, except the middle finger, it is shut tight, so I'm working on her being able to flip anyone off with her left hand.
5/21/07 Tina wanted me to finish reading Kate's Journey (the book by the Locked in Syndrome survivor). Weird, the chapter I pick up on was about when Kate was starting to eat and drink again - just what Tina is working towards right now. We take for granted that when we swallow liquids that they go down the right "pipe", but Kate would choke on water and in the beginning only could swallow pureed, thicker substances. So, I told Tina that she has to work really hard to strengthen her throat towards the day she will be able to swallow correctly.
5/25/07 They took out the foley (urinary) catherter and Tina is very happy.
5/28/07 Memorial Day - this is kind of the 1 year anniversary, since the accident was on Memorial Day.
Lisa, Kevin and Charlene were there when I got to the hospital. Charlene wants to have her tattoo artist come in a put a "Survivor" tattoo on Tina. Tina said, "No".
5/29/07 Today is the actual 1 year anniversary of the accident. Today, Tina told me to tell all the Bristol people who have come to visit recently, thank you - Bill and Diana, Don, Camelia, Anna, Patty cakesthere was another woman who I couldn't decipher her name). And I want to thank Tina's regulars: karin, Courtney, Becky, Tim, Jack, Kurt, Jackie, Teresa, Michael, Stephanie, Kathy & Robert, Bill and Diana Veeder, Charlene and her gang of kids: Hannah, Nathaniel and Jacob; Brad, Angelina and the kids (I know Courtney wrote that on the sign in sheet). I really appreciate you guys taking time out of your schedules to visit Tina - it helps me out alot.
I want to thank my karaoke friends who get me out regularly to let off steam: Genie, Tori, Al, Nick, Marcel, Pam, Marie. Yes, I'm becoming quite the karaoke queen and I even get compliments from singers I admire. I read somewhere that if a person is depressed they can't sing - I think all this singing is good for my soul.
Until next time,
Linda
I know it has been a long time and some folks have been asking about Tina. Here is a continuation of my journal. Sorry to bore you, but it is important to keep these notes to see progress, setbacks and to let family and friends see how her spirits are on a daily basis. Some days there are no entries, because it was same old, same old.
3/1/07 Tina is still at Los Alamitos Hospital. She has been very quiet since she's been at Los Alamitos. Maybe she's depressed. To cheer her up I danced as the losers of American Idol sang but for all my efforts, she barely cracked a smile. I told Tina everything is ok, it is safe to come home (so hurry up and get better), she won't have any worries. I read Emi Mukumoto's and DeeDee Mejia's emails to her and she cried.
3/6/07 Back at Country Villa!! What a homecoming. Everyone was excited to see me when I walked in and Tina was so happy to be back. While I was there staff kept coming in to welcome her back. What a difference a day makes, she was obviously very unhappy at Los Alamitos Hospital, but now she is back to her old self.
3/13/07 I get tired of making small talk to Tina everyday, and some days she doesn't have anythying to communicate either, so I just massage her. At the end of today's massage I pretended like I was a faith healer and she was all giggles with my antics. I gotta be creative with my visits after seeing her almost every day for, as of today 288 days or almost 10 months - I don't write this for anyone to feel sorry for me, it is just to remind myself of why I'm so tired sometimes. Sometimes I get from people that I'm a saint (he he he), an angel, or their hero (yes, I've been called all 3 names) for all that I try to do for Tina - I'm none of that, I just love that little punk (my Little Tiner Weiner, that is what I've call her since she was a baby - and I've embarrassed her many times by calling her that in public).
Tina's brain stem is injuried, that is why she can't move, but her thinking brain is all there. My brain stem is fully in tact and sometimes I feel like a chicken with its head cut off, I'm physically moving but I'm so overloaded, my thinking brain just doesn't seem to work or it just wants to sleep. Most of the time I just don't have my game on like I used to. I just fly by the seat of my pants most days, some days I honestly don't know how I got from Point A to Point B.
3/14/07 Tina is tired of watching TV, she wanted to listen to the radio, so I put on a station 93.9 which has lots of dance music. Shakira was on so as I massaged her I was doing some Shakira moves and she was cracking up, but she was secretly hoping that someone would walk in on me and embarrass me - me embarrassed?
3/15/07 Tina communicated to me, with the help of the nursing supervisor Joanne, that they are going to go back to working on Tina talking and that she still has an infection at the site where the G-tube was so they are going to try to get her to talk and swallow and then eat food. Tina is all for it - she made that decision with her medical team. That is good for her, she didn't feel she needed my approval. She's tired of having the feeding tube in her abdomen and in her nose. So, what seemed to be a setback, is actually giving Tina and the team a feel for a more aggressive approach. I feel that when Tina is able to speak that could really help in her healing progress, that she'd be more independent. (When I wrote "Tina talking..." above, it reminded me of that Twilight Zone about the doll "Talky Tina" - For you TV trivia buffs, here is a web link about that episode: http://en.wikipedia.org/wiki/Living_Doll_(The_Twilight_Zone)
Bill & Dianna Veeder came to visit Tina today. On the sign in sheet I have column that asks, "Where do you know Tina from?" Bill wrote "I met her on a street corner". So when I told Tina what he wrote, she mouthed "that asshole" and we giggled. Good one Bill.
On the sign-in sheet Tim and Jack (the un-gay couple) always sign, "Tim and Jack - Heterosexuals" or something similar. Can someone spell "d-e-n-i-a-l"?
Today, my daughter Jessie wrote me an email which said, "if there truly are soulmates in this world, i think you're one of them (for me)." She made me feel all warm and fuzzy. I love my kids!!! & son-in-law & brother, Joe - with all that has gone on with Tina - a benefit of it is that my family is even more loving! When I need them, they are there.
3/17 - 18/07 Crash and burn mode - slept all weekend.
3/21/07 Today, Dwayne the Respiratory Supervisor came in with an RT he was introducing to the patients. He said, "And here we have TT (that is what he calls her) and she is doing great, she has a fighting spirit and is doing her best. Little by little she's moving her neck and her trunk and we are proud of her." Tina responded with a big smile.
4/1/07 Today as I massaged her I sang that little Mexican song that parents sing to their children when they get a boo boo: "Sana sana cola de rana..(I don't know the rest)" The translation is "heal, heal tail of a frog" - Yeah, yeah, I know it is one of the weird Mexican traditions. I know it reminded Tina of my mom and grandma.
4/6 I talked with the nursing assistant who feels Tina is not getting her hands exercized enough, Tina said her hands are cramping, and regarding Tina's toenails being cut by a podiatrist. I informed the supervisors about the situation.
4/7/07 I visited Tina with Derek. Since my talk with the nursing assistnat yesterday, I began aggresively doing range of motor exercises with Tina myself. I was afraid to handle her left arm, the arm with the big scar and the plate and screws in it but she said it was ok to move it and that it didn't hurt. Tina was so stiff, trying to raise her arm was like trying to jack up a monster truck. When I was rotating her right arm she was making a face, Derek said, "I think it hurts her." She said "No." Then she spelled "boobs". The angle I am in to massage her right arm causes her hand to rub against my boob! We just fell out laughing.
4/13/07 Friday the 13th. Today I took a walk to El Dorado Park and I guess I thought I was driving, not following to the signal for a pedestrian because I walked right in front of an SUV. It wasn't my day to die, because the SUV somehow came to a gentle stop about 10 feet away from me. I NEED A VACATION!!! Diane told me that maybe it's Post Traumatic Stress. I just know I can't get a handle on details, make this phone call, fill out this form, pay this bill, blah, blah, all Tina's details that I really don't want to deal with, but I have to, who else will? I've got my own details and I'm not dealing with those very well either. I'm just venting here. I don't know what I'd do without Diane as my sounding board or being there as someone to bounce things off of.
4/16/07 On the spur of the moment I rented a car and drove to Sedona to visit my friend Jane Ann. It was great hanging out with Jane Ann and her sister Jill. I really needed to get away. I listened to audio books and it was such a great ride. I felt better when I got back and I was only gone a few days so Tina didn't miss me that much. But, wouldn't you know, as I got off the freeway at Willow off ramp I get a call about a situation (not medically related) that I had to take care of for Tina - just goes to show you, you can't escape your problems.
5/3/07 Bill & Diana Veeder came to visit. This is what he wrote on the sign in sheet: "I met her at an Aerosmith concert - love in the elevator!" When I read to Tina, she mouthed, once again, "Asshole".
5/7/07 I'm doing a Forrest Gump. Remember when he ran across the US and then back again? I rented another car and drove to Grand Junction, CO this time. My friend MaryAnne came with me on our Thelma and Louise road trip.
5/13/07 Back from my road trip to Grand Junction, CO, to stay at my friends, Dave & Laurie Lester's bed and breakfast: www.willowpondbnb.com. Did a day at Glenwood Springs, CO at a mineral bath an hour away from Aspen. At the mineral bath MaryAnne said, a little too loud "I feel like I'm in the movie Cocoon with all these old people". We went to the Grand Junction wine country, a tour of Colorado National Monument, which is almost in Laurie's backyard. Laurie and Dave are wonderful innkeepers, their place is beautiful and she makes the best gourmet breakfasts!! I felt very well taken care of and let them spoil me! We drove back through Utah and a day in Moab (wow, what a great place!). The drive is like driving through an art museum, incredible views everywhere. About 30 miles out of Las Vegas on the 15 coming from Utah, there was an accident that shut down the 2 lane freeway for 3 hours. I know that truckers have CB radios, so I got out of the car (since it was like a parking lot) and knocked on the door of a truck and hopped up on the side to find out what was going on and then other drivers in their cars waved me down to tell them the news. Maryanne said she should have gotten a photo of me hanging on the side of the big rigs - I went to 3 different trucks to make sure I got all the news. This trip to Colorado coupled with my trip to Sedona is what I needed to get me back on track from this year of having to be sooooo responsible.
As I left Grand Junction, Laurie gave me a copy of Christopher Reeves book, "Still Me". When I started to read it I just got as far as the first paragraph of the dust jacket before I broke down crying - his accident was Memorial Day, 1995 and Tina's was Memorial Day 2006!
When I got back Tina had made some more significant improvements and I can hear her now with her Passi Muir Valve - which she uses to speak. They said she needs to practice talking more and my sister is a woman of few words (unlike me LOL) so today I took some music she likes and made her sing and told her when to take deep breaths. Dwayne, the Respiratory Supervisor was joking about it being the Nursing Home Idol! Then he told me Tina's room mate, Kathleen passed away while I was gone. Kathleen was a tiny woman ravaged by MS - but even though she didn't speak, she had quite a sense of humor and I would look out for her since I never saw any family members visiting her. The nurses would joke with her and Tina alot and hold up a mirror so they could see each other. Dwayne said that their room was known as "The Girls Room" (since they were the youngest patients) and they made jokes about "Girls Rule" but instead they would joke with Tina and Kathleen that "Girls Drool" since they are both on ventilators and need to be suctioned. My sister just cracked up at that joke and Dwayne was cracking himself up too. When I rotated Tina's left arm it went up so much higher with more ease that I could see all this hair under her armpits. I joked with her, "Tina, you have so much hair under your arms, you could braid it! She asked me for some Bath and Body Works lotions and bath gel, so I went out and bought some and I went back to shave her armpits - the things you gotta do, huh? I had started the agressive range of motion exercised on 4/7 and now on 5/13, one month and one week later she has loosened up so much and moves her left arm a little more - I used to be worried because it was very tight and she didn't move it - kind of like how stroke vicitms have their left arms and hands clenched. I rotate her fingers on her left hand and they all move ok, except the middle finger, it is shut tight, so I'm working on her being able to flip anyone off with her left hand.
5/21/07 Tina wanted me to finish reading Kate's Journey (the book by the Locked in Syndrome survivor). Weird, the chapter I pick up on was about when Kate was starting to eat and drink again - just what Tina is working towards right now. We take for granted that when we swallow liquids that they go down the right "pipe", but Kate would choke on water and in the beginning only could swallow pureed, thicker substances. So, I told Tina that she has to work really hard to strengthen her throat towards the day she will be able to swallow correctly.
5/25/07 They took out the foley (urinary) catherter and Tina is very happy.
5/28/07 Memorial Day - this is kind of the 1 year anniversary, since the accident was on Memorial Day.
Lisa, Kevin and Charlene were there when I got to the hospital. Charlene wants to have her tattoo artist come in a put a "Survivor" tattoo on Tina. Tina said, "No".
5/29/07 Today is the actual 1 year anniversary of the accident. Today, Tina told me to tell all the Bristol people who have come to visit recently, thank you - Bill and Diana, Don, Camelia, Anna, Patty cakesthere was another woman who I couldn't decipher her name). And I want to thank Tina's regulars: karin, Courtney, Becky, Tim, Jack, Kurt, Jackie, Teresa, Michael, Stephanie, Kathy & Robert, Bill and Diana Veeder, Charlene and her gang of kids: Hannah, Nathaniel and Jacob; Brad, Angelina and the kids (I know Courtney wrote that on the sign in sheet). I really appreciate you guys taking time out of your schedules to visit Tina - it helps me out alot.
I want to thank my karaoke friends who get me out regularly to let off steam: Genie, Tori, Al, Nick, Marcel, Pam, Marie. Yes, I'm becoming quite the karaoke queen and I even get compliments from singers I admire. I read somewhere that if a person is depressed they can't sing - I think all this singing is good for my soul.
Until next time,
Linda
posted by Lisa @ 9:26 AM
Wednesday, February 28, 2007
Feb. Update
Hi everyone,
2/1/07 - Tina communicated to me that Dr. Chung, from Country Villa, will be taking her off the ventilator during the days. She is so much more expressive and does facial and mouth exercises everyday so all the staff and visitors have a much easier time communicating with her.
2/2/07 - Tina's first day off vent for 5 hours - she was breathing deeply and happy to be doing so. They are going to do some swallow tests to see how she swallows water and then food.
2/3/07 - Tina is tired and yawns a lot, I think it is from breathing on her own, but she is proud of her own improvement. But she feels so much better breathing on her own and takes deep breaths for me.
2/7/07 - Tina is moving a bit more and she slips and slides, this week I've had to adjust her or call someone to adjust because she can't position herself.
2/8/07 - Tina's roommate, Kathleen, who is shriveled and twisted from ravages of MS, made a painting for Tina. I really got choked up when I saw it - Kathleen was so happy to give it to Tina.
2/11/07: Jessie came down from San Francisco to visit her auntie Tina. Tina just loves when my kids visit - they clown around and Tina is right there in the act. I feel it helps her healing process.
2/12/07 - Tina is breathing so deeply that the Passi Muir Valve blew out and surprised the Respiratory Tech. Dee Dee. They had a big laugh about that. As she gets more volume and strength in her lungs they want to do the swallow tests and hopefully close up the tracheostomy hole. Wow, I can't wait until the day that I hear her voice again.
2/13/07 Tina's friend Kurt visited and brought her some beautiful orchids and asked her to be his Valentine - I told her that even in the hospital she has more aciton than me! 2/14/07 - Valentine's Day for Valentina. I sang to Tina, and her roommate Kathleen, songs from the "Dirty Dancing" CD. That CD is a favorite for both. I especially got tearful when I sang "Hey Baby", because I sang that to her when back in the day (last July) she was in the Cardiac ICU at Kaiser when she was not doing well at all. A nursing assistant came in on her day off with her two daughters with a vase of flowers each for Kathleen and Tina. She called them her princesses. She spoke to Tina and Kathleen in Spanish and Tina, who I didn't think knew that much Spanish responded. I think when Tina gets out of the hospital she will have a much better understanding of Spanish and maybe Tagalog (Phillipino) too! I started to cry overwhelmingly with the nursing assistant's love for Tina and Kathleen.
2/22/07: Following is an email I sent to those who visit Tina on a weekly basis - so they wouldn't get scared finding her bed emplty. I didn't send a major email because we thought Tina would only be gone a day or two:
I received a phone call at work that my sister was going to be transferred to Los Alamitos Hospital because she had an infection in her G -tube (the feeding tube in her stomach) and they were going to change the G-tube. It seemed that it would only be a matter of a few days before she'd be back at Country Villa. When I got to Country Villa, they were wheeling Tina out to take her to Los Alamitios Medical Center. She was crying because she was scared and since her feeding tube had been out she hasn't had any nourishment (and according to her friend Charlene, who is a surgical tech, Tina may have also been dehydrated). When I got to Los Alamitios Hospital, Tina was chanting (those of you who may not know, Tina and I were raised as Buddhists). It is kind of funny because I was trying to figure out what she was saying, and then she communicated, "I'm chanting" and gave me a "duh" look and we giggled. The vampire tech (can't think of what they are called) had difficulty trying to find her veins. I have veins that any heroin addict would love, but poor Tina, they couldn't find hers for the IV nor the blood test. So I assisted the tech to calm her down and translate for him. It was good I was there because since it is a new hospital the staff doesn't know how she communicates. Before I got there, the nurse tried to put a G tube down her nose to her stomach, but Tina kept gagging. When he tried again I held her hand and I talked her through it, like, "Tina just relax, go somewhere pleasant in your mind, get out of your body." "Almost there Tina, it is almost there." Stuff like that. It was difficult for the tube to pass through her throat because of the trachesostomy tube already in her throat. Man, I'm not cut out for all this mucous and blood, I had to muster the strength for me not to gag. The two male nurses were Napoleon and Julius - two conquerors. Napoleon put in a cold liquid to help with a contrast for the cat scan they were going to give her two hours later, she calmed down and I had to go shopping for last minute things for my trip to Florida the next morning. When I went back to the hospital at 11:00 PM, she was dozing off so I told her I had to go home and pack and be up at 4:00AM. She knew I was going to Florida for an Arts Conference, so she was OK that I left. They were going to call me if they find an obstruction. As I left a doctor asked me who had taken out the G-tube feeding tube she had in her stomach. I told him I didn't know, and he should call Country Villa. She was still in emergency when I left, but the doctor said they'd probably keep her a day or two. Here is the address: 3751 Katella, Los Alamitos, 90720 Phone: 562.598.1311 Parking is FREE!!!! Please take care of her while I'm gone. She'll be ok, she's a lot stronger than she was when she first went through this procedure. I'll be back from Florida on Monday 2/26. Love, Linda
02/25/07 Charlene and family visited and they asked Charlene if she was family and she said yes. They asked for consent for a pick line - a permanent IV something, something (you know me by now - not medical in any way) and she gave permission. Thank you Charlene because I would have given consent myself anyway.
02/26/07 - Tina is in ICU at Los Alamitos Medical Center. She didn't look good. She was drugged. Thanks Courtney, Karin, Becky, Lisa, Dave, Diane, Terry & Guy, Stephanie, Charleen & Family for visiting her and thanks for your telephone updates while I was in Florida. I really appreciate your support. During my visit Tina didn't mouth or communicate much - with that tube down her throat, I'm sure she's not comfortable, so I just sat and watched "Wife Swap" with her. She just seemed happy I was there. But even through this ordeal, with her eyes she motioned to me to look at her left arm - she was moving it a bit more than before and she was also moving her upper torso, like she was trying to adjust herself.
02/27/07 - I visited Tina with Derek and Emily late last night. Tina showed us that she was still trying to move her upper torso. She was very quiet. I asked Derek to take some photos of her. I'm keeping photo documentation now, with her approval, every month. Derek is so funny, he goes into a British accent and said, "Ok now Tina, give me an angry look." and he snapped the photo. Then he says, "Darling, give me your pouty look." And each time he took a photo Tina was trying to make the face he wanted. Derek, Emily and I were quietly giggling, we sounded like Scooby Doo (I think he's the dog with that laugh). Tina was pleased with herself that she was able to entertain us with her different poses. A nurse came in and told us that the other patients needed our comic relief. It is these moments when Tina's personality still shines through that gives me so much hope of her full recovery.
2/28/07 - This morning I spoke with nurse Ari. She reported that last night's ultrasound showed some abcesses that need to be cleaned out and that procedure is scheduled late this afternoon or possibly 7 pm. Later the GI doctor will do the procedure to insert a new G-tube. They first have to heal the problem before starting a new G-Tube.
Here is the hospital info: Los Alamitos Medical Center (a tiny hospital the size of a phone booth): 3751 Katella, Los Alamitos, 90720 Main Phone: 562.598.1311 Parking is FREE!!!! Visiting hours: 24 hours – no visitors during morning and evening 7-8 shift change
Right now, we don't know how long she will be there. Thanks for all your prayers and good wishes for Tina's healing. She is improving little by little. Even with the recent events, when a person has foreign tubes and objects in the body, there is bound to be an infection sooner or later. Tina is much stronger and I know everything will turn out fine.
Linda
2/1/07 - Tina communicated to me that Dr. Chung, from Country Villa, will be taking her off the ventilator during the days. She is so much more expressive and does facial and mouth exercises everyday so all the staff and visitors have a much easier time communicating with her.
2/2/07 - Tina's first day off vent for 5 hours - she was breathing deeply and happy to be doing so. They are going to do some swallow tests to see how she swallows water and then food.
2/3/07 - Tina is tired and yawns a lot, I think it is from breathing on her own, but she is proud of her own improvement. But she feels so much better breathing on her own and takes deep breaths for me.
2/7/07 - Tina is moving a bit more and she slips and slides, this week I've had to adjust her or call someone to adjust because she can't position herself.
2/8/07 - Tina's roommate, Kathleen, who is shriveled and twisted from ravages of MS, made a painting for Tina. I really got choked up when I saw it - Kathleen was so happy to give it to Tina.
2/11/07: Jessie came down from San Francisco to visit her auntie Tina. Tina just loves when my kids visit - they clown around and Tina is right there in the act. I feel it helps her healing process.
2/12/07 - Tina is breathing so deeply that the Passi Muir Valve blew out and surprised the Respiratory Tech. Dee Dee. They had a big laugh about that. As she gets more volume and strength in her lungs they want to do the swallow tests and hopefully close up the tracheostomy hole. Wow, I can't wait until the day that I hear her voice again.
2/13/07 Tina's friend Kurt visited and brought her some beautiful orchids and asked her to be his Valentine - I told her that even in the hospital she has more aciton than me! 2/14/07 - Valentine's Day for Valentina. I sang to Tina, and her roommate Kathleen, songs from the "Dirty Dancing" CD. That CD is a favorite for both. I especially got tearful when I sang "Hey Baby", because I sang that to her when back in the day (last July) she was in the Cardiac ICU at Kaiser when she was not doing well at all. A nursing assistant came in on her day off with her two daughters with a vase of flowers each for Kathleen and Tina. She called them her princesses. She spoke to Tina and Kathleen in Spanish and Tina, who I didn't think knew that much Spanish responded. I think when Tina gets out of the hospital she will have a much better understanding of Spanish and maybe Tagalog (Phillipino) too! I started to cry overwhelmingly with the nursing assistant's love for Tina and Kathleen.
2/22/07: Following is an email I sent to those who visit Tina on a weekly basis - so they wouldn't get scared finding her bed emplty. I didn't send a major email because we thought Tina would only be gone a day or two:
I received a phone call at work that my sister was going to be transferred to Los Alamitos Hospital because she had an infection in her G -tube (the feeding tube in her stomach) and they were going to change the G-tube. It seemed that it would only be a matter of a few days before she'd be back at Country Villa. When I got to Country Villa, they were wheeling Tina out to take her to Los Alamitios Medical Center. She was crying because she was scared and since her feeding tube had been out she hasn't had any nourishment (and according to her friend Charlene, who is a surgical tech, Tina may have also been dehydrated). When I got to Los Alamitios Hospital, Tina was chanting (those of you who may not know, Tina and I were raised as Buddhists). It is kind of funny because I was trying to figure out what she was saying, and then she communicated, "I'm chanting" and gave me a "duh" look and we giggled. The vampire tech (can't think of what they are called) had difficulty trying to find her veins. I have veins that any heroin addict would love, but poor Tina, they couldn't find hers for the IV nor the blood test. So I assisted the tech to calm her down and translate for him. It was good I was there because since it is a new hospital the staff doesn't know how she communicates. Before I got there, the nurse tried to put a G tube down her nose to her stomach, but Tina kept gagging. When he tried again I held her hand and I talked her through it, like, "Tina just relax, go somewhere pleasant in your mind, get out of your body." "Almost there Tina, it is almost there." Stuff like that. It was difficult for the tube to pass through her throat because of the trachesostomy tube already in her throat. Man, I'm not cut out for all this mucous and blood, I had to muster the strength for me not to gag. The two male nurses were Napoleon and Julius - two conquerors. Napoleon put in a cold liquid to help with a contrast for the cat scan they were going to give her two hours later, she calmed down and I had to go shopping for last minute things for my trip to Florida the next morning. When I went back to the hospital at 11:00 PM, she was dozing off so I told her I had to go home and pack and be up at 4:00AM. She knew I was going to Florida for an Arts Conference, so she was OK that I left. They were going to call me if they find an obstruction. As I left a doctor asked me who had taken out the G-tube feeding tube she had in her stomach. I told him I didn't know, and he should call Country Villa. She was still in emergency when I left, but the doctor said they'd probably keep her a day or two. Here is the address: 3751 Katella, Los Alamitos, 90720 Phone: 562.598.1311 Parking is FREE!!!! Please take care of her while I'm gone. She'll be ok, she's a lot stronger than she was when she first went through this procedure. I'll be back from Florida on Monday 2/26. Love, Linda
02/25/07 Charlene and family visited and they asked Charlene if she was family and she said yes. They asked for consent for a pick line - a permanent IV something, something (you know me by now - not medical in any way) and she gave permission. Thank you Charlene because I would have given consent myself anyway.
02/26/07 - Tina is in ICU at Los Alamitos Medical Center. She didn't look good. She was drugged. Thanks Courtney, Karin, Becky, Lisa, Dave, Diane, Terry & Guy, Stephanie, Charleen & Family for visiting her and thanks for your telephone updates while I was in Florida. I really appreciate your support. During my visit Tina didn't mouth or communicate much - with that tube down her throat, I'm sure she's not comfortable, so I just sat and watched "Wife Swap" with her. She just seemed happy I was there. But even through this ordeal, with her eyes she motioned to me to look at her left arm - she was moving it a bit more than before and she was also moving her upper torso, like she was trying to adjust herself.
02/27/07 - I visited Tina with Derek and Emily late last night. Tina showed us that she was still trying to move her upper torso. She was very quiet. I asked Derek to take some photos of her. I'm keeping photo documentation now, with her approval, every month. Derek is so funny, he goes into a British accent and said, "Ok now Tina, give me an angry look." and he snapped the photo. Then he says, "Darling, give me your pouty look." And each time he took a photo Tina was trying to make the face he wanted. Derek, Emily and I were quietly giggling, we sounded like Scooby Doo (I think he's the dog with that laugh). Tina was pleased with herself that she was able to entertain us with her different poses. A nurse came in and told us that the other patients needed our comic relief. It is these moments when Tina's personality still shines through that gives me so much hope of her full recovery.
2/28/07 - This morning I spoke with nurse Ari. She reported that last night's ultrasound showed some abcesses that need to be cleaned out and that procedure is scheduled late this afternoon or possibly 7 pm. Later the GI doctor will do the procedure to insert a new G-tube. They first have to heal the problem before starting a new G-Tube.
Here is the hospital info: Los Alamitos Medical Center (a tiny hospital the size of a phone booth): 3751 Katella, Los Alamitos, 90720 Main Phone: 562.598.1311 Parking is FREE!!!! Visiting hours: 24 hours – no visitors during morning and evening 7-8 shift change
Right now, we don't know how long she will be there. Thanks for all your prayers and good wishes for Tina's healing. She is improving little by little. Even with the recent events, when a person has foreign tubes and objects in the body, there is bound to be an infection sooner or later. Tina is much stronger and I know everything will turn out fine.
Linda
posted by Lisa @ 4:06 PM
Sunday, January 28, 2007
December 06/January 07 Update
Aloha everyone,
Some folks have been asking for an update.
12/2: Tina has been so please with her little improvements. She communicated that she when she recovered fully she was going back to school and she said, “I’m free”. Wow, in her condition and what she’s been through she feels a sense of freedom.
12/8 Tina wanted a mirror, I was nervous about getting her one. I thought, "How will she feel looking at herself with that tracheostomy tube coming out of her throat?" When Tina got the mirror, she wasn't phased! But she was upset that she had a little acne. She just takes things in stride.
12/9: Tina sometimes gets bossy with me or wants me to stay longer. I told her, "Tina you lay there all day and I'm running around living my life and your life, I'm exhausted!" I have to decide to leave when I'm ready and not let her coerce me into staying.
12/11: Tina communicated about a nurse being rude - Tina can't speak but that doesn't stop her from being able to make a complaint. In all my dealings with that nurse, the nurse has been very helpful to me, in fact she had given me copies of the Kaiser medical reports that helped expedite Tina's Medi-Cal - when the woman at Social Security realized that Tina had Kaiser medical insurance, she said, well, this will slow things down, but I gave her those medical copies and she said that would incredibly speed the process. I told Tina to have a little appreciation for that nurse.
12/12: Tina communicated to me her feet stopped hurting. They were so sensitive that I could only massage her legs down to her ankle bones. Even the weight of a light sheet hurt her feet. She was mad at our brother Joey for about 6 weeks because he tickled her feet when he left after a visit and pissed her off. I finally found out why she was mad at him. I massaged her and she was totally cracking up. Her legs reflexed to my touch and she was happy about that movement.
12/15: Tina, said she had a dream about our dad, who died 29 years ago, when she was 8 years old and he told her he was proud of me, Tina and our brother Joe. She communicated it was a happy dream. She mouthed that she wanted to write.
12/16: Tina communicated that her doctor said, in response to her moving, "I think your body's waking up." and "I don't think you are truly paralyzed." She was soooo happy.
12/19: One of Tina's friend's Karin, hooked her up with cable! Thanks, Karin, Tina really appreciates it! (and so do the guys who work there, so they can watch all the ball games - just kidding)
12/20: Tina communicated that she sat in the Geri chair from 9 am to 2 pm - without the ventilator!!! She spells the Geri (geriatric) chair, Jeri - but since she is unfamiliar with medical terminology, she doesn't know that geriatric means "old", so I let her spell it "Jeri" chair because she's not old.
12/21: Tina said she's her doctor's favorite. There are so many people there in that unit who are just ready to die and Tina is showing improvement. She's the light in a lot of the employee's lives there.
The Christmas holidays were great for us. My intention was to have a great Christmas and lots of fun. Jessie came down from SF and Derek was back from college and along with Lisa and Kevin we had a happy holiday and a lot of laughter when we visited Tina.
But one day when I visited with my daughter Jessie, Tina was trying to communicate something that we just couldn’t get the concept of, so she got frustrated and got upset and made Jessie cry. Because I’ve never been in Tina’s situation, I can’t truly understand her, but once in awhile during this journey, I have to just end up leaving because I get frustrated too. For the most part Tina is so sweet, but it is just human nature that people get on each other’s last nerve.
12/27: Tina communicated that she felt tingling or prickling throughout her body. I asked if it hurt her and she nodded "No". She's not blinking so much to communicate, I'm much better at reading her lips, plus the use of the alphabet board. The Respiratory Supervisor, Dwayne says that the staff read her lips much better because she is much more expressive with mouthing her words. But she does have a lisp that she never had before when she mouths "s".
12/30: Tina raised her right arm higher than normal while she was talking and she didn’t realize she moved so high, it was like she moved naturally.
1/5/07: With the help of my friend Diane Julian, Tina wrote her name and moved her left arm! She began moving her shoulders more and her left hand isn't so tight fisted, like that of a stroke victim.
I can't remember which day it was but, Karin and Mike were visiting Tina and I was joking with them that Tina sometimes asks me to tickle her feet. I tell her she is getting freaky deaky on me, when she asks me to tickle (only when she "asks" Tim and Jack) I think she is happy she is reflexing.
1/4/07: Tina's doctor told her, "2007 is going to be your year!" in regards to her improvements.
1/8/07: I received a call from the Deputy District Attorney. I was preparing the bills to give to the DA for the restitution/surrender hearing and planned on mailing the 60 + page bill package that day; however, the D.A. asked me to attend the court proceeding on 1/12/07. She asked how much the Kaiser denied bills came to and I told her it was about 12,000. She said, "Is that all?" They estimated the bills would come to approximately $40,000.00 I told her I was remodeling the entry way and the bathroom for wheelchair access and she told me to include those bills. Then I thought of adding my time for all my hours since the beginning of this ordeal, to give them something to throw out.
I had a hard time sleeping all week. My heart would wake me up because it was pounding so loudly. I may have mentioned this in another email, our brother was murdered 9 years ago and it is the same LA. County court house, so I had a lot of anxiety. Sometimes I can't catch my breath. Plus, I knew I would have to see the heartless she-devil who spawned the guy who hit my sister - that woman tried to intimidate me at the preliminary hearing by staring me down, like it was my fault her son was in trouble.
1/12/07 Kevin, my son in law, drove me to the court house. The elevators weren't working, we waited way too long and we were 15 minutes late, so Kevin and I ran up 11 flights of stairs! (we did take a rest on the 6th floor). Man, that was a gnarly work out - good thing I work out or I would have been another victim of all this mess.
I couldn't remember the exact court room, so I looked into the different rooms, finally I looked in one and the guy's mother says in Spanish, with her attitude, "There she is." I called Kevin and said, "This is the right place because she recognized me." as I pointed at her.
The guy's lawyer was trying to bring down the amount of the bills with our attorney and then the guy got up and went up to his lawyer and made a hand motion then they approached the bench and the judge asked about the bills. Our attorney was explaining in detail and then the judge asked, "Does this all have to do with the accident?" The D.A. said, "Yes." The Judge said, "Well then it is all medical". The Judge accepted the whole bill! The guy got 1 year in County Jail, but will probably only spend 1/4 or less of the time due to overcrowding. For 5 years he can be searched, strip searched and property seized and law enforcement can search him or his property without a warrant. As soon as he is out of jail, he has to report to Probation and they will set up a payment schedule (I guess well see how that goes).
After it was over the D.A. came up to me and said, "Did you see when he came up to me and his attorney and make that gesture with his hands? He told his attorney to stop bargaining and said “I'll pay it." The D.A. told me that this case would help in the civil suit.
After I told Tina how it all went, I asked her how she felt, she said, "I feel great - he left me to die." I told her I was glad I went and was able to see his mom cry, see him wave good-bye and walk through the doors into custody.
Sat 01/20/07: Tina had a rough day. A nurse and a nursing assistant who were not from Tina’s acute area were covering her unit. That night at about 9:00 pm I received a phone call from a nurse that alarmed me about Tina's tracheostomy, which on Sunday I find out wasn't anything at all, so all night I worried about Tina.
Sun 01/21/07: Tina told me of the Sat. incident with the nursing assistant (which I’m choosing not to go into detail). Her regular nurses and Respiratory Tech came to her defense and put me on the phone with the supervisor at home. He said he would look into it on Monday.
1/21/07 The RT supervisor did look in to the situation, but there was another incident with that nursing assistant. I told the supervisors I don't want that nursing assistant coming near Tina.
1/22/07 Tues I had a conference call with the Social Worker, Director of Nursing and the Director of something else. Everyone is looking into the incidents and watching out for Tina. The care at this facility has been great, but this week has been trying for both Tina and myself. The staff is communicating with me and dealing with the situation head on.
I told Tina to use that energy of being upset with that nursing assistant toward her recovery, to get herself well and out of there. A lot of the staff just love her so much, and treat her like a princess and she shouldn’t get too comfortable.
So, with all that said regarding theses incidents, I'm requesting Tina's friends to keep visiting her. It is good for the staff to see her have many visitors, at different times of the day. I feel it keeps the staff on their toes, that is why I make sure I am there almost every day.
1/26/07 Today Tina told me that she could hear voice when she spoke with the Passi Muir Valve! And she swallowed liquid! They have been getting her up about 3 times a week in the Geri chair and she is without the ventilator for about 6 hours so I think her lungs are getting stronger so she has more volume of breath to come out. Little by little she is improving.
Despite all that has been going on at the hospital with Tina and dealing with the supervisory staff, my remodeling turned from the handicap accessibility to a full kitchen & dining room remodel too; the Director of Promotions of the Long Beach Ice Dogs Hockey team found me on my partypop.com website and called me. Some of my hula students and I will be dancing during the 2 intermissions, essentially we will be the "quarter time" entertainment at this Sunday's game, 1/28, 5 pm at the LB arena!
Thanks for all your support. I told Tina she is famous. So many people who have never met her know her through these emails. And many people pray for her recovery and wellness every day. I'm waiting for the day she "Walks" in through my "new" front door (she might need some help, but that's ok) and I keep telling her that we are going to have a big humonga kawabunga coming home party - and you are all invited!
Linda
Some folks have been asking for an update.
12/2: Tina has been so please with her little improvements. She communicated that she when she recovered fully she was going back to school and she said, “I’m free”. Wow, in her condition and what she’s been through she feels a sense of freedom.
12/8 Tina wanted a mirror, I was nervous about getting her one. I thought, "How will she feel looking at herself with that tracheostomy tube coming out of her throat?" When Tina got the mirror, she wasn't phased! But she was upset that she had a little acne. She just takes things in stride.
12/9: Tina sometimes gets bossy with me or wants me to stay longer. I told her, "Tina you lay there all day and I'm running around living my life and your life, I'm exhausted!" I have to decide to leave when I'm ready and not let her coerce me into staying.
12/11: Tina communicated about a nurse being rude - Tina can't speak but that doesn't stop her from being able to make a complaint. In all my dealings with that nurse, the nurse has been very helpful to me, in fact she had given me copies of the Kaiser medical reports that helped expedite Tina's Medi-Cal - when the woman at Social Security realized that Tina had Kaiser medical insurance, she said, well, this will slow things down, but I gave her those medical copies and she said that would incredibly speed the process. I told Tina to have a little appreciation for that nurse.
12/12: Tina communicated to me her feet stopped hurting. They were so sensitive that I could only massage her legs down to her ankle bones. Even the weight of a light sheet hurt her feet. She was mad at our brother Joey for about 6 weeks because he tickled her feet when he left after a visit and pissed her off. I finally found out why she was mad at him. I massaged her and she was totally cracking up. Her legs reflexed to my touch and she was happy about that movement.
12/15: Tina, said she had a dream about our dad, who died 29 years ago, when she was 8 years old and he told her he was proud of me, Tina and our brother Joe. She communicated it was a happy dream. She mouthed that she wanted to write.
12/16: Tina communicated that her doctor said, in response to her moving, "I think your body's waking up." and "I don't think you are truly paralyzed." She was soooo happy.
12/19: One of Tina's friend's Karin, hooked her up with cable! Thanks, Karin, Tina really appreciates it! (and so do the guys who work there, so they can watch all the ball games - just kidding)
12/20: Tina communicated that she sat in the Geri chair from 9 am to 2 pm - without the ventilator!!! She spells the Geri (geriatric) chair, Jeri - but since she is unfamiliar with medical terminology, she doesn't know that geriatric means "old", so I let her spell it "Jeri" chair because she's not old.
12/21: Tina said she's her doctor's favorite. There are so many people there in that unit who are just ready to die and Tina is showing improvement. She's the light in a lot of the employee's lives there.
The Christmas holidays were great for us. My intention was to have a great Christmas and lots of fun. Jessie came down from SF and Derek was back from college and along with Lisa and Kevin we had a happy holiday and a lot of laughter when we visited Tina.
But one day when I visited with my daughter Jessie, Tina was trying to communicate something that we just couldn’t get the concept of, so she got frustrated and got upset and made Jessie cry. Because I’ve never been in Tina’s situation, I can’t truly understand her, but once in awhile during this journey, I have to just end up leaving because I get frustrated too. For the most part Tina is so sweet, but it is just human nature that people get on each other’s last nerve.
12/27: Tina communicated that she felt tingling or prickling throughout her body. I asked if it hurt her and she nodded "No". She's not blinking so much to communicate, I'm much better at reading her lips, plus the use of the alphabet board. The Respiratory Supervisor, Dwayne says that the staff read her lips much better because she is much more expressive with mouthing her words. But she does have a lisp that she never had before when she mouths "s".
12/30: Tina raised her right arm higher than normal while she was talking and she didn’t realize she moved so high, it was like she moved naturally.
1/5/07: With the help of my friend Diane Julian, Tina wrote her name and moved her left arm! She began moving her shoulders more and her left hand isn't so tight fisted, like that of a stroke victim.
I can't remember which day it was but, Karin and Mike were visiting Tina and I was joking with them that Tina sometimes asks me to tickle her feet. I tell her she is getting freaky deaky on me, when she asks me to tickle (only when she "asks" Tim and Jack) I think she is happy she is reflexing.
1/4/07: Tina's doctor told her, "2007 is going to be your year!" in regards to her improvements.
1/8/07: I received a call from the Deputy District Attorney. I was preparing the bills to give to the DA for the restitution/surrender hearing and planned on mailing the 60 + page bill package that day; however, the D.A. asked me to attend the court proceeding on 1/12/07. She asked how much the Kaiser denied bills came to and I told her it was about 12,000. She said, "Is that all?" They estimated the bills would come to approximately $40,000.00 I told her I was remodeling the entry way and the bathroom for wheelchair access and she told me to include those bills. Then I thought of adding my time for all my hours since the beginning of this ordeal, to give them something to throw out.
I had a hard time sleeping all week. My heart would wake me up because it was pounding so loudly. I may have mentioned this in another email, our brother was murdered 9 years ago and it is the same LA. County court house, so I had a lot of anxiety. Sometimes I can't catch my breath. Plus, I knew I would have to see the heartless she-devil who spawned the guy who hit my sister - that woman tried to intimidate me at the preliminary hearing by staring me down, like it was my fault her son was in trouble.
1/12/07 Kevin, my son in law, drove me to the court house. The elevators weren't working, we waited way too long and we were 15 minutes late, so Kevin and I ran up 11 flights of stairs! (we did take a rest on the 6th floor). Man, that was a gnarly work out - good thing I work out or I would have been another victim of all this mess.
I couldn't remember the exact court room, so I looked into the different rooms, finally I looked in one and the guy's mother says in Spanish, with her attitude, "There she is." I called Kevin and said, "This is the right place because she recognized me." as I pointed at her.
The guy's lawyer was trying to bring down the amount of the bills with our attorney and then the guy got up and went up to his lawyer and made a hand motion then they approached the bench and the judge asked about the bills. Our attorney was explaining in detail and then the judge asked, "Does this all have to do with the accident?" The D.A. said, "Yes." The Judge said, "Well then it is all medical". The Judge accepted the whole bill! The guy got 1 year in County Jail, but will probably only spend 1/4 or less of the time due to overcrowding. For 5 years he can be searched, strip searched and property seized and law enforcement can search him or his property without a warrant. As soon as he is out of jail, he has to report to Probation and they will set up a payment schedule (I guess well see how that goes).
After it was over the D.A. came up to me and said, "Did you see when he came up to me and his attorney and make that gesture with his hands? He told his attorney to stop bargaining and said “I'll pay it." The D.A. told me that this case would help in the civil suit.
After I told Tina how it all went, I asked her how she felt, she said, "I feel great - he left me to die." I told her I was glad I went and was able to see his mom cry, see him wave good-bye and walk through the doors into custody.
Sat 01/20/07: Tina had a rough day. A nurse and a nursing assistant who were not from Tina’s acute area were covering her unit. That night at about 9:00 pm I received a phone call from a nurse that alarmed me about Tina's tracheostomy, which on Sunday I find out wasn't anything at all, so all night I worried about Tina.
Sun 01/21/07: Tina told me of the Sat. incident with the nursing assistant (which I’m choosing not to go into detail). Her regular nurses and Respiratory Tech came to her defense and put me on the phone with the supervisor at home. He said he would look into it on Monday.
1/21/07 The RT supervisor did look in to the situation, but there was another incident with that nursing assistant. I told the supervisors I don't want that nursing assistant coming near Tina.
1/22/07 Tues I had a conference call with the Social Worker, Director of Nursing and the Director of something else. Everyone is looking into the incidents and watching out for Tina. The care at this facility has been great, but this week has been trying for both Tina and myself. The staff is communicating with me and dealing with the situation head on.
I told Tina to use that energy of being upset with that nursing assistant toward her recovery, to get herself well and out of there. A lot of the staff just love her so much, and treat her like a princess and she shouldn’t get too comfortable.
So, with all that said regarding theses incidents, I'm requesting Tina's friends to keep visiting her. It is good for the staff to see her have many visitors, at different times of the day. I feel it keeps the staff on their toes, that is why I make sure I am there almost every day.
1/26/07 Today Tina told me that she could hear voice when she spoke with the Passi Muir Valve! And she swallowed liquid! They have been getting her up about 3 times a week in the Geri chair and she is without the ventilator for about 6 hours so I think her lungs are getting stronger so she has more volume of breath to come out. Little by little she is improving.
Despite all that has been going on at the hospital with Tina and dealing with the supervisory staff, my remodeling turned from the handicap accessibility to a full kitchen & dining room remodel too; the Director of Promotions of the Long Beach Ice Dogs Hockey team found me on my partypop.com website and called me. Some of my hula students and I will be dancing during the 2 intermissions, essentially we will be the "quarter time" entertainment at this Sunday's game, 1/28, 5 pm at the LB arena!
Thanks for all your support. I told Tina she is famous. So many people who have never met her know her through these emails. And many people pray for her recovery and wellness every day. I'm waiting for the day she "Walks" in through my "new" front door (she might need some help, but that's ok) and I keep telling her that we are going to have a big humonga kawabunga coming home party - and you are all invited!
Linda
posted by Lisa @ 8:57 AM
November Update
Hi all,
Long time no update...
10/28/06: Tina was shivering and I had to get a lot of blankets and massage her to warm her up. I had to go buy her some socks too. She was in the beginning of a urinary tract infection. They also thought that perhaps she might have internal bleeding - this was a big blow for me. How, could she be bleeding internally?
11/01/06: Tina didn't have internal bleeding - boy was I scared for a few days.
11/06/06: Today was the very first day that I felt on top of things. I had nothing outstanding that I had to do on Tina's behalf. I cleaned my house!! I worked in my garden!! It was hot today and I felt like it was an opportunity to have a little bit of summer since I missed this past summer with all I had to do. My life felt normal again. I made a determination to have the Best Thanksgiving and the Best Christmas no matter what, despite Tina's situation.
11/07/06: I sat with Tina to watch "Dancing with the Stars". That show was a hit with the whole hospital, you could hear it all down the hallway. Her favorite was Emmit Smith. I dialed up his number and pressed her finger so she could vote.
11/10/06: TINA CLOSED HER RIGHT FIST AROUND MY FINGER!!! She squeezed my hand and I screamed. She laughed at me, she'd been waiting to pull that stunt. I laughed and cried. She was happy to make me happy.
11/11/06: I woke up this morning and went straight to my computer to format the blog we made for Tina into a book format. I even made a cover page and I called the book "Blink", since that is how she communicates. I got a photo of Tina's pretty eyes and cropped it. I took it over to Tina and told her that when she is able to communicate, she can read it and tell me what she was feeling or thinking during all these past months. Tina got excited about the prospect of a book. I finally read to her some of the blog postings that people submitted and we cried, thinking back on those beginning days and how far she's come. When I go to the hospital sometimes I have to deal with nurses, or Tina's comfort or just straighten up her room, or massage her so I hadn't read those blog entries to her. She really enjoyed them and and told me to tell all of you who posted a blog, "Thank You"!
11/19/06: I visited Tina with my daughters, Jessie and Lisa. We joked that when Tina finally gets out and about, that perhaps one day she'd be at a drive through and the voice on the speaker asks, "You want fries with that?", Tina would be so used to blinking that instead of saying yes or no, she'd blink. Tina is always so happy to see my kids, she really acts up for them, making me her "straight man" in the act.
11/20/06: The guy who hit Tina was in court today. I thought he was supposed to surrender and go to jail for his 1 year sentence (which will be shorter due to jail overcrowding). However, they postponed it until Jan 12. So he will be able to spend the holidays with is family. But the DA said that he will go to jail Jan. 12th.
11/21/06: Tina's 36th Birthday - Tina had so many visitors & flowers & gifts! It can get kind of rowdy with all her friends, lots of laughter. Lots of good people. I truly appreciate all those friends who visit regularly - you are a ray of sunshine for her. I think Tina realizes that she is truly loved.
Tina has been amazing all her visitors with her movement.
11/22/06: Tina mouthed to me, "I want to tell you..." and then she spelled out, "I'm happy to be alive." That little punk knows how to make me cry. She also said she wants to be home by January. That is her goal - it could happen, miracles happen every day.
As I drove home, I cried happy tears, what a change from the beginning of this journey way back in May! In her seemingly sad situation Tina is happy to be alive - her spirit amazes me every day. She is an example of how precious life is.
11/23/06: Thanksgiving - When my brother Joey came to visit, Tina flipped him off. Joey didn't know she could move, so he was surprised that she moved her finger that much - we all laughed. The last time he visited was too long ago and he had tickled Tina's feet and that really bugged her, so she had been mad at him since.
Our Thanksgiving was a great joyful day with family and friends and I was grateful that Tina was alive and in good spirits. She didn't even feel bad that she couldn't be with us - she takes things like a pro. So, yes, I did have a great Thanksgiving just like I wanted.
Every day I pray for her to move one more little part of her body. An increment of movement is exciting!
11/24/06: Tina has been using the Passi Muir valve to practice speaking and she’s proud of herself. Since we have a beautiful photo of Lisa and Kevin at their wedding posted in the room, the Speech Therapist had her practice, “I Love You Lisa” (sorry Kevin). By strengthening her vocal chords, she swallows better. In the last few weeks when she practiced with the valve, she'd become very exhausted, on a few occasions I couldn't even wake her she was that tired. Today, she had the RT put in the Passi Muir valve, she wanted to speak to Derek. It is very hard to hear with all the machines and fans going on. When Derek leaned down to listen to her, she made a fart sound and cracked us up. She's gotten more control of her mouth and face muscles. My son Derek, a theater major at the University of Redlands was back for Thanksgiving, well, in his joking manner he had all the nurses and respiratory techs giggling (all women, of course – I think he takes after his uncles Bobby & Joey) - he is such a flirt, but I don’t think he knows it.
11/26/06: A nurse told me that Tina did the "Peace Sign" for her. She also moves her right arm in to her body sometimes and does a "Thigh Master"/ “Nut Cracker” routine with her thighs.
11/27/06 I read "Kate's Journey" to Tina - the book by the "Locked-In Syndrome" survivor. I haven't read it in a long time, so today I read for 2 hours. There are so many points in the book that just bring us to tears from very similar situations we have also experienced, but today I read to Tina about Kate's ambulance ride from Torrance Memorial to Daniel Freeman Hospital and how Kate was so scared that she'd die during the transfer. I started to cry as I read and when I looked up Tina was crying too. I remembered how frightened I was that something could happen when Tina was transferred from Cedars-Sinai, 9 days after the accident with Tina on a ventilator and then when she was transferred from Kaiser to where she is currently, Country Villa in Long Beach. When I asked Tina if she was afraid during those transfers she blinked and nodded yes. I remember I felt Tina might be afraid to be in a vehicle again, after what she experienced during the accident.
11/28/06: A male nurse heard me spelling out the alphabet to communicate, so he went and made me an alphabet board and showed me how to use it.
A B C D E
F G H I J
K L M N O
P Q R S T
U V W X Y/Z
I ask her how many words and then I just point to the column and she nods yes if it is in that column, then I go down the column. It is easier and quicker than the method I was using and some people did tell me about an alphabet board, but they never even used it themselves. I guess I was to overwhelmed to bother with looking one up on the internet and my way was working pretty good for a long time. This board works well and I don’t get so dizzy. But I can say that the way I did communicate, spelling out the alphabet, made me see how quick her mind still is to spell out words and sentences. I think both forms help to keep her mind quick and alert.
11/29/06: A co-worker Don Z., from Bristol Farms, Mission Viejo came to visit. He brought her a back scratcher so she can use it as a goal. He really made her day. He also wrote me a very nice letter that made Tina cry when I read it to her.
11/30/06 Tina moved her right arm in up a few inches and in, kind of like she was doing a driving stick shift motion. She’s working hard. With all these incremental movements, she has been in very good spirits.
12/1/06 I spoke to one of Tina’s favorite nurses, Sheila, and she said that Tina has surprised the staff with her improvement.
Today, the Respiratory Supervisor, Dwayne told me that they want to have a care plan meeting with me in the next few weeks because Tina wants to go home – that means come home with me to my house. I told him I don’t know if I can take care of her. I have to do it by myself and I have to work. I don’t want to be disappointed in people who mean well by saying they will help and not be there in the end. I’m going to be very honest and blunt here, because way back in the beginning, a lot of people said, “When Tina goes home, I’m going to help and when she comes to Long Beach, I’m going to visit her…” Some of those people haven’t even visited her one time in Long Beach. But that is the nature of humans and this is a true and honest reality for people in this situation. I’m a firm believer that my actions should match my words.
So, with all Tina’s progress lately, today I feel overwhelmed thinking of being her sole caregiver, 24 hours a day. I may have to remodel my home to accommodate her, I will have to be trained in using the ventilator and the feeding tubes, learn how to suction her, etc., etc. I’m such a big chicken, I faint at the sight of blood - even fake blood in the movies! Just ask my kids, I was horrible when they got hurt. I had to bandage my son’s toes from ingrown toenail surgery and my legs buckled under after I bandaged him that I had to crawl around the house for about a half and hour until I got my strength back – I’m serious – I’m a medical weenie. I’m really good with my hands for massage type stuff, but open wounds and stuff like that, well I guess I’ll get used to that and that is part of my growing up in this lifetime. When my mom was alive, I learned to test her blood sugar and give her insulin shots and I overcame that fear. I can shake it off and learn how to do this too.
I told Tina my concerns and she understands, but I also told her, we are going to have the care plan meeting and see what the hospital staff proposes. Who knows maybe it will all work out. It will be the next phase of this journey.
Anyway, from the bottom of my heart, thanks for all your prayers, I really feel that everyone’s prayers are part of Tina’s healing process and even though I may have put a little sting in the paragraph above, Tina and I and my family are truly appreciative of all your sincere prayers and good wishes for Tina’s recovery.
Linda
Long time no update...
10/28/06: Tina was shivering and I had to get a lot of blankets and massage her to warm her up. I had to go buy her some socks too. She was in the beginning of a urinary tract infection. They also thought that perhaps she might have internal bleeding - this was a big blow for me. How, could she be bleeding internally?
11/01/06: Tina didn't have internal bleeding - boy was I scared for a few days.
11/06/06: Today was the very first day that I felt on top of things. I had nothing outstanding that I had to do on Tina's behalf. I cleaned my house!! I worked in my garden!! It was hot today and I felt like it was an opportunity to have a little bit of summer since I missed this past summer with all I had to do. My life felt normal again. I made a determination to have the Best Thanksgiving and the Best Christmas no matter what, despite Tina's situation.
11/07/06: I sat with Tina to watch "Dancing with the Stars". That show was a hit with the whole hospital, you could hear it all down the hallway. Her favorite was Emmit Smith. I dialed up his number and pressed her finger so she could vote.
11/10/06: TINA CLOSED HER RIGHT FIST AROUND MY FINGER!!! She squeezed my hand and I screamed. She laughed at me, she'd been waiting to pull that stunt. I laughed and cried. She was happy to make me happy.
11/11/06: I woke up this morning and went straight to my computer to format the blog we made for Tina into a book format. I even made a cover page and I called the book "Blink", since that is how she communicates. I got a photo of Tina's pretty eyes and cropped it. I took it over to Tina and told her that when she is able to communicate, she can read it and tell me what she was feeling or thinking during all these past months. Tina got excited about the prospect of a book. I finally read to her some of the blog postings that people submitted and we cried, thinking back on those beginning days and how far she's come. When I go to the hospital sometimes I have to deal with nurses, or Tina's comfort or just straighten up her room, or massage her so I hadn't read those blog entries to her. She really enjoyed them and and told me to tell all of you who posted a blog, "Thank You"!
11/19/06: I visited Tina with my daughters, Jessie and Lisa. We joked that when Tina finally gets out and about, that perhaps one day she'd be at a drive through and the voice on the speaker asks, "You want fries with that?", Tina would be so used to blinking that instead of saying yes or no, she'd blink. Tina is always so happy to see my kids, she really acts up for them, making me her "straight man" in the act.
11/20/06: The guy who hit Tina was in court today. I thought he was supposed to surrender and go to jail for his 1 year sentence (which will be shorter due to jail overcrowding). However, they postponed it until Jan 12. So he will be able to spend the holidays with is family. But the DA said that he will go to jail Jan. 12th.
11/21/06: Tina's 36th Birthday - Tina had so many visitors & flowers & gifts! It can get kind of rowdy with all her friends, lots of laughter. Lots of good people. I truly appreciate all those friends who visit regularly - you are a ray of sunshine for her. I think Tina realizes that she is truly loved.
Tina has been amazing all her visitors with her movement.
11/22/06: Tina mouthed to me, "I want to tell you..." and then she spelled out, "I'm happy to be alive." That little punk knows how to make me cry. She also said she wants to be home by January. That is her goal - it could happen, miracles happen every day.
As I drove home, I cried happy tears, what a change from the beginning of this journey way back in May! In her seemingly sad situation Tina is happy to be alive - her spirit amazes me every day. She is an example of how precious life is.
11/23/06: Thanksgiving - When my brother Joey came to visit, Tina flipped him off. Joey didn't know she could move, so he was surprised that she moved her finger that much - we all laughed. The last time he visited was too long ago and he had tickled Tina's feet and that really bugged her, so she had been mad at him since.
Our Thanksgiving was a great joyful day with family and friends and I was grateful that Tina was alive and in good spirits. She didn't even feel bad that she couldn't be with us - she takes things like a pro. So, yes, I did have a great Thanksgiving just like I wanted.
Every day I pray for her to move one more little part of her body. An increment of movement is exciting!
11/24/06: Tina has been using the Passi Muir valve to practice speaking and she’s proud of herself. Since we have a beautiful photo of Lisa and Kevin at their wedding posted in the room, the Speech Therapist had her practice, “I Love You Lisa” (sorry Kevin). By strengthening her vocal chords, she swallows better. In the last few weeks when she practiced with the valve, she'd become very exhausted, on a few occasions I couldn't even wake her she was that tired. Today, she had the RT put in the Passi Muir valve, she wanted to speak to Derek. It is very hard to hear with all the machines and fans going on. When Derek leaned down to listen to her, she made a fart sound and cracked us up. She's gotten more control of her mouth and face muscles. My son Derek, a theater major at the University of Redlands was back for Thanksgiving, well, in his joking manner he had all the nurses and respiratory techs giggling (all women, of course – I think he takes after his uncles Bobby & Joey) - he is such a flirt, but I don’t think he knows it.
11/26/06: A nurse told me that Tina did the "Peace Sign" for her. She also moves her right arm in to her body sometimes and does a "Thigh Master"/ “Nut Cracker” routine with her thighs.
11/27/06 I read "Kate's Journey" to Tina - the book by the "Locked-In Syndrome" survivor. I haven't read it in a long time, so today I read for 2 hours. There are so many points in the book that just bring us to tears from very similar situations we have also experienced, but today I read to Tina about Kate's ambulance ride from Torrance Memorial to Daniel Freeman Hospital and how Kate was so scared that she'd die during the transfer. I started to cry as I read and when I looked up Tina was crying too. I remembered how frightened I was that something could happen when Tina was transferred from Cedars-Sinai, 9 days after the accident with Tina on a ventilator and then when she was transferred from Kaiser to where she is currently, Country Villa in Long Beach. When I asked Tina if she was afraid during those transfers she blinked and nodded yes. I remember I felt Tina might be afraid to be in a vehicle again, after what she experienced during the accident.
11/28/06: A male nurse heard me spelling out the alphabet to communicate, so he went and made me an alphabet board and showed me how to use it.
A B C D E
F G H I J
K L M N O
P Q R S T
U V W X Y/Z
I ask her how many words and then I just point to the column and she nods yes if it is in that column, then I go down the column. It is easier and quicker than the method I was using and some people did tell me about an alphabet board, but they never even used it themselves. I guess I was to overwhelmed to bother with looking one up on the internet and my way was working pretty good for a long time. This board works well and I don’t get so dizzy. But I can say that the way I did communicate, spelling out the alphabet, made me see how quick her mind still is to spell out words and sentences. I think both forms help to keep her mind quick and alert.
11/29/06: A co-worker Don Z., from Bristol Farms, Mission Viejo came to visit. He brought her a back scratcher so she can use it as a goal. He really made her day. He also wrote me a very nice letter that made Tina cry when I read it to her.
11/30/06 Tina moved her right arm in up a few inches and in, kind of like she was doing a driving stick shift motion. She’s working hard. With all these incremental movements, she has been in very good spirits.
12/1/06 I spoke to one of Tina’s favorite nurses, Sheila, and she said that Tina has surprised the staff with her improvement.
Today, the Respiratory Supervisor, Dwayne told me that they want to have a care plan meeting with me in the next few weeks because Tina wants to go home – that means come home with me to my house. I told him I don’t know if I can take care of her. I have to do it by myself and I have to work. I don’t want to be disappointed in people who mean well by saying they will help and not be there in the end. I’m going to be very honest and blunt here, because way back in the beginning, a lot of people said, “When Tina goes home, I’m going to help and when she comes to Long Beach, I’m going to visit her…” Some of those people haven’t even visited her one time in Long Beach. But that is the nature of humans and this is a true and honest reality for people in this situation. I’m a firm believer that my actions should match my words.
So, with all Tina’s progress lately, today I feel overwhelmed thinking of being her sole caregiver, 24 hours a day. I may have to remodel my home to accommodate her, I will have to be trained in using the ventilator and the feeding tubes, learn how to suction her, etc., etc. I’m such a big chicken, I faint at the sight of blood - even fake blood in the movies! Just ask my kids, I was horrible when they got hurt. I had to bandage my son’s toes from ingrown toenail surgery and my legs buckled under after I bandaged him that I had to crawl around the house for about a half and hour until I got my strength back – I’m serious – I’m a medical weenie. I’m really good with my hands for massage type stuff, but open wounds and stuff like that, well I guess I’ll get used to that and that is part of my growing up in this lifetime. When my mom was alive, I learned to test her blood sugar and give her insulin shots and I overcame that fear. I can shake it off and learn how to do this too.
I told Tina my concerns and she understands, but I also told her, we are going to have the care plan meeting and see what the hospital staff proposes. Who knows maybe it will all work out. It will be the next phase of this journey.
Anyway, from the bottom of my heart, thanks for all your prayers, I really feel that everyone’s prayers are part of Tina’s healing process and even though I may have put a little sting in the paragraph above, Tina and I and my family are truly appreciative of all your sincere prayers and good wishes for Tina’s recovery.
Linda
posted by Lisa @ 8:56 AM
Tuesday, October 17, 2006
Sept. 15 - Oct. 17 Updates
Hi everyone,
09/15/06: I sent the District Attorney photographs of Tina that my brother took at Cedars-Sinai the first few days after the accident. He also took photos at 3 1/2 months and it is quite evident that Tina's condition had not gotten much better. I wrote a letter stating that to the DA Tina was just a name and that I felt she needed to see the impact of Tina's injuries.
The DA is a restitution specialist and I tallied up all Tina's bills that I received until that date and it is staggering. For 10 days at Cedars-Sinai the bills came to $719,000 and Kaiser paid $509,000. Approx. $17,500 was denied (I still need to check on or re-submit these but I'm not in the mood). (Ok, you can close your mouth now.) I've never been a Kaiser member, but I haven't received any Kaiser bills, so I guess they don't bill. If that is the case, then all the the above figures don't even include her month stay in ICU at Kaiser!!
Her stay at the long term nursing facility was quoted to me for private pay at $328.00 per day, this does not include medications and ancillary services. So for 30 days it is $9,840.00 for private pay room & board only.
09/17/06: I went over the Power of Attorney and the Advanced Health Care Directive with Tina. The Advanced Health Care Directive is the best way to make sure that your health care wishes are known and considered if for any reason you are unable to speak for yourself. You may appoint another person to be your health care "agent." Second, you may write down your health care wishes in the Advance Health Care Directive form—for example, a desire not to receive treatment that only prolongs the dying process if you are terminally ill. Your doctor and your agent must follow your lawful instructions. http://www.cmanet.org/publicdoc.cfm/7
When I went over the form with Tina, I was really happy that she choose to have all means to keep her alive, I cried and thanked her. Some of you who haven't seen her think she is in a coma or vegetative state. She is not - she is fully there, even with her sense of humor she is still Tina.
I've applied for Victim's Assistance for Tina, a state agency that helps to pay costs after all other avenues have been exhausted.
Thur 10/05/06 I had been off on vacation the week before and this week also. All I did was work on Tina's business. I would work a little then I'd need to take a break - it is hard working with all the details of her life and the emotions involved. I worked on her accounting, applying for Social Security for Tina, applying for Long-Term Care Medi-Cal (what a pain in the ass form). Filling out all these forms, especially Social Security, I had to relive the whole ordeal. My right hand was shaking after I filled out that form. The woman at Social Security, after our 2.5 hour meeting said, "I need a nap." That is what I feel, I can only take on chunks at a time. I had meetings and many phone calls to and from Kaiser, COBRA, and Country Villa hospital staff. Today I even broke down and cried on the phone when someone asked me for one more form!!!! There are so many details. What happens of someone doesn't have anyone to do all the paperwork? Everyone has been very nice, but it is like I'm the first person to go through this, no one knows what to do first, so in a way there is a lot of run around with "the system". The facility where she's at told me that now that I've applied for Medi-Cal that the facility will bill Medi-Cal $13,500.00 per month!
This afternoon after a very trying week I received a call from Kate Adamson. She had had a stroke and had the same thing Tina has been diagnosed with, "Locked In Syndrome", they can feel but they can't move. I had ordered Kate's book called "Kate's Journey" (www.katesjourney.com) the week before and there was a box to request an autograph with inscription - so I wrote about Tina's situation. Kate has overcome the Locked In Syndrome, but still is paralyzed in her left arm, and partial use of her left leg, but she is now an inspirational speaker, who lives in Redondo Beach. Kate called me and said she had been out of town on a speaking engagement, she asked about Tina and said she wants to visit Tina when she returns in 3 weeks from a speaking tour. I wanted to cry. Here is someone who knows what we are going thru, but more important she knows what Tina is going thru! I'm reading the book to Tina and there are so many similarities and in some cases Kate had more problems with medical staff than we have had. There are times when Tina cries as I'm reading, but I still think it is healing for her and there are times when I can't read anymore because I'm crying so much. The Respiratory Tech said when Kate visits they will put Tina in this "Geri chair" and move her into the living room.
Tina is put in the Geri Chair 2 or 3 times per week and they have entertainment at the facility. That is if she wants to - sometimes she is so stubborn and doesn't want to leave her room. She is doing much better without the cervical collar. She moves her head and neck more. The other day she spelled "My leg." So I thought she was in pain, then she spelled, "Look" and she move it a little. I tell you this slight movement can make me so happy.
Sat 10/07/06 My daughter Jessie came down from San Francisco. You can see Tina's heart go to mush when she sees my kids - she loves them so much. I introduced Tina's favorite nurse, Sheila to my daughters Jessie and Lisa. Sheila made a comment about the two sets of sisters and Tina slowly spelled out to me (I go through the alphabet and she blinks yes on each letter) "I'm the pretty one." Here we are thinking that she needs something but she is being a wisecracker. She just cracked us up.
When I say Tina spells out - I mean that I go through the alphabet and Tina blinks yes on the correct letter. It is time consuming and makes me dizzy. Sometimes people bring in a paper with the whole alphabet thinking that it will help me, but they should try it everyday - that would make me dizzy too, looking back and forth at the paper and to see her response, so my way works pretty good.
Mon 10/09/06 Tina spelled out to me "throat valve". It is called a Passi-Muir Valve. The Respiratory Supervisor said they put it in at 2:00 and that it would be in until 6:00. Tina mouthed, "oh no." and made us laugh, she wasn't laughing, it was uncomfortabe. He said she is supposed to practice the vowels and yes and no. She was so exhausted when I came into the room and he said that it was because she was using her vocal chords. I asked what she would sound like and he said, her voice would sound normal but right now it is a very small whisper. It makes her cough, but that is good. I cried a little, I haven't heard her voice in almost 5 months! I read the book,"Kate's Journey" to her and we both cried, and I massaged her and then I told her that we should practice her speaking. It was so exciting to hear even that little squeak of a whisper. So I had her do the vowels, then yes and no a few times and then I said some cuss words and she repeated, like a bad little girl and we started cracking up, I practically fell down on the bed laughing so hard and the nurses came running up because they thought I was crying. So they even got in on the laughing. It was an emotional visit from one end of the spectrum to the other.
One of the attorney's told me to keep track of my time, good thing I had kind of already started it and had a lot of good notes. As of 10/13/06 I've spent the equivalent of 36 eight hour days since the accident. Seeing things in black and white makes me realize why I'm so damn tired, why I don't want to think anymore, I don't want to fill out any more forms, etc.
I am asking for her friends to please continue visiting. Some people have stopped coming. I know people are busy, but if you can spare some time it really helps me out. I visited her everyday for 2 months straight and sometimes if I know people are going to visit, I can take a break. So, if you do go, if you can let me know, email is always good, (cell: 562.400.0021) I'd appreciate it and please sign the log that is on the wall.
The address again is: Country Villa, 1730 Grand Ave., LB Room 7C (go to the right wing)
Remember, we have a blog: www.everybodylovestina.blogspot.com in case anyone wants to post a message.
Little by little I'm meeting Tina's friends and one by one, people who are on someone's email list, who don't know me nor Tina who are praying for her. It really touches my heart.
Some people ask me how I can keep up with all this stuff or talk like I'm some kind of hero, but I'm just doing what I have to do and I can't give up. If I was in her situation I would really be bored as hell and would appreciate visitors. Tina is so very appreciative of all that I do.
It is really hard trying to get caught up to speed on someone else's life and trying to take care of my own life, and my own businesses, plumbing problems, car problems,cell problems, etc. it can be overwhelming at times with no end in sight. My life is so extreme, in the past few months my hula business has been booming and I even have a website: http://partypop.com/Vendors/4109107.htm (shameless promotion). I'm going through all this serious heavy duty stuff with Tina and on the other end I'm doing all these parties and I'm center of attention. I guess it is good for me, so that I'm taken out of the mundane everyday business. I just finished a piece (book/play not sure) I was writing that I told Tina it was dedicated to her. When I told her I finished, after working on it for a year, she was very happy.
I've been working with Tina having her close her eyes and visualize her coming home party, the menu, the guest list, places she wants to travel to, clothes she wants to shop for. She spells out colors, textures, etc. I go thru magazines and have her pick things out she likes. When I do this kind of activity and as I leave she is in much higher spirits. It gives her hope.
My friend Diane says that right now, with Tina being unable to speak she is "The Secret Keeper"- so if there is anything you need to get off your chest and confess to somebody, go tell Tina.
The staff say that they've seen patients who receive visitors make the best improvements. I've heard from the nurses that they've seen people worse off than Tina and they have seen wonderful results in cases that were almost hopeless. Please think of her healthy, well and SASSY.
Thank you so much for your healing prayers - despite it all she looks pretty good. Skin condition is good, no bedsores, no pneumonia since she got over it from Kaiser days, urinary tract infections, but they say that happens when people have foley catheters.
10/17/06 This morning Tina and I had a meeting with 2 attorneys. They were really nice and had good stuff to report (I'm choosing not to broadcast) but when they left Tina was uncomfortable and we asked if she wanted pain meds, she kept mouthing stuff but I couldn't understand, I tried to spell things out and she finally spelled out "nothing" - that nothing was wrong with her physically. I asked, "Are you sad". She gave me the evil eye and mouthed "no", then I understood "mad", "I'm mad". She cried and I told her she had every right to cry and be mad as hell, but I have to go to work and I can't stay here with you. I told her I'd put a movie on and she didn't want it, so I put on "Grease" anyway, just in case she felt better later.
Deep, deep, deep down inside me, I fell Tina will recover.
Thank you, thank you, thank you for all the prayers and good wishes.
With Love from Tina's Big Sis,
Linda
09/15/06: I sent the District Attorney photographs of Tina that my brother took at Cedars-Sinai the first few days after the accident. He also took photos at 3 1/2 months and it is quite evident that Tina's condition had not gotten much better. I wrote a letter stating that to the DA Tina was just a name and that I felt she needed to see the impact of Tina's injuries.
The DA is a restitution specialist and I tallied up all Tina's bills that I received until that date and it is staggering. For 10 days at Cedars-Sinai the bills came to $719,000 and Kaiser paid $509,000. Approx. $17,500 was denied (I still need to check on or re-submit these but I'm not in the mood). (Ok, you can close your mouth now.) I've never been a Kaiser member, but I haven't received any Kaiser bills, so I guess they don't bill. If that is the case, then all the the above figures don't even include her month stay in ICU at Kaiser!!
Her stay at the long term nursing facility was quoted to me for private pay at $328.00 per day, this does not include medications and ancillary services. So for 30 days it is $9,840.00 for private pay room & board only.
09/17/06: I went over the Power of Attorney and the Advanced Health Care Directive with Tina. The Advanced Health Care Directive is the best way to make sure that your health care wishes are known and considered if for any reason you are unable to speak for yourself. You may appoint another person to be your health care "agent." Second, you may write down your health care wishes in the Advance Health Care Directive form—for example, a desire not to receive treatment that only prolongs the dying process if you are terminally ill. Your doctor and your agent must follow your lawful instructions. http://www.cmanet.org/publicdoc.cfm/7
When I went over the form with Tina, I was really happy that she choose to have all means to keep her alive, I cried and thanked her. Some of you who haven't seen her think she is in a coma or vegetative state. She is not - she is fully there, even with her sense of humor she is still Tina.
I've applied for Victim's Assistance for Tina, a state agency that helps to pay costs after all other avenues have been exhausted.
Thur 10/05/06 I had been off on vacation the week before and this week also. All I did was work on Tina's business. I would work a little then I'd need to take a break - it is hard working with all the details of her life and the emotions involved. I worked on her accounting, applying for Social Security for Tina, applying for Long-Term Care Medi-Cal (what a pain in the ass form). Filling out all these forms, especially Social Security, I had to relive the whole ordeal. My right hand was shaking after I filled out that form. The woman at Social Security, after our 2.5 hour meeting said, "I need a nap." That is what I feel, I can only take on chunks at a time. I had meetings and many phone calls to and from Kaiser, COBRA, and Country Villa hospital staff. Today I even broke down and cried on the phone when someone asked me for one more form!!!! There are so many details. What happens of someone doesn't have anyone to do all the paperwork? Everyone has been very nice, but it is like I'm the first person to go through this, no one knows what to do first, so in a way there is a lot of run around with "the system". The facility where she's at told me that now that I've applied for Medi-Cal that the facility will bill Medi-Cal $13,500.00 per month!
This afternoon after a very trying week I received a call from Kate Adamson. She had had a stroke and had the same thing Tina has been diagnosed with, "Locked In Syndrome", they can feel but they can't move. I had ordered Kate's book called "Kate's Journey" (www.katesjourney.com) the week before and there was a box to request an autograph with inscription - so I wrote about Tina's situation. Kate has overcome the Locked In Syndrome, but still is paralyzed in her left arm, and partial use of her left leg, but she is now an inspirational speaker, who lives in Redondo Beach. Kate called me and said she had been out of town on a speaking engagement, she asked about Tina and said she wants to visit Tina when she returns in 3 weeks from a speaking tour. I wanted to cry. Here is someone who knows what we are going thru, but more important she knows what Tina is going thru! I'm reading the book to Tina and there are so many similarities and in some cases Kate had more problems with medical staff than we have had. There are times when Tina cries as I'm reading, but I still think it is healing for her and there are times when I can't read anymore because I'm crying so much. The Respiratory Tech said when Kate visits they will put Tina in this "Geri chair" and move her into the living room.
Tina is put in the Geri Chair 2 or 3 times per week and they have entertainment at the facility. That is if she wants to - sometimes she is so stubborn and doesn't want to leave her room. She is doing much better without the cervical collar. She moves her head and neck more. The other day she spelled "My leg." So I thought she was in pain, then she spelled, "Look" and she move it a little. I tell you this slight movement can make me so happy.
Sat 10/07/06 My daughter Jessie came down from San Francisco. You can see Tina's heart go to mush when she sees my kids - she loves them so much. I introduced Tina's favorite nurse, Sheila to my daughters Jessie and Lisa. Sheila made a comment about the two sets of sisters and Tina slowly spelled out to me (I go through the alphabet and she blinks yes on each letter) "I'm the pretty one." Here we are thinking that she needs something but she is being a wisecracker. She just cracked us up.
When I say Tina spells out - I mean that I go through the alphabet and Tina blinks yes on the correct letter. It is time consuming and makes me dizzy. Sometimes people bring in a paper with the whole alphabet thinking that it will help me, but they should try it everyday - that would make me dizzy too, looking back and forth at the paper and to see her response, so my way works pretty good.
Mon 10/09/06 Tina spelled out to me "throat valve". It is called a Passi-Muir Valve. The Respiratory Supervisor said they put it in at 2:00 and that it would be in until 6:00. Tina mouthed, "oh no." and made us laugh, she wasn't laughing, it was uncomfortabe. He said she is supposed to practice the vowels and yes and no. She was so exhausted when I came into the room and he said that it was because she was using her vocal chords. I asked what she would sound like and he said, her voice would sound normal but right now it is a very small whisper. It makes her cough, but that is good. I cried a little, I haven't heard her voice in almost 5 months! I read the book,"Kate's Journey" to her and we both cried, and I massaged her and then I told her that we should practice her speaking. It was so exciting to hear even that little squeak of a whisper. So I had her do the vowels, then yes and no a few times and then I said some cuss words and she repeated, like a bad little girl and we started cracking up, I practically fell down on the bed laughing so hard and the nurses came running up because they thought I was crying. So they even got in on the laughing. It was an emotional visit from one end of the spectrum to the other.
One of the attorney's told me to keep track of my time, good thing I had kind of already started it and had a lot of good notes. As of 10/13/06 I've spent the equivalent of 36 eight hour days since the accident. Seeing things in black and white makes me realize why I'm so damn tired, why I don't want to think anymore, I don't want to fill out any more forms, etc.
I am asking for her friends to please continue visiting. Some people have stopped coming. I know people are busy, but if you can spare some time it really helps me out. I visited her everyday for 2 months straight and sometimes if I know people are going to visit, I can take a break. So, if you do go, if you can let me know, email is always good, (cell: 562.400.0021) I'd appreciate it and please sign the log that is on the wall.
The address again is: Country Villa, 1730 Grand Ave., LB Room 7C (go to the right wing)
Remember, we have a blog: www.everybodylovestina.blogspot.com in case anyone wants to post a message.
Little by little I'm meeting Tina's friends and one by one, people who are on someone's email list, who don't know me nor Tina who are praying for her. It really touches my heart.
Some people ask me how I can keep up with all this stuff or talk like I'm some kind of hero, but I'm just doing what I have to do and I can't give up. If I was in her situation I would really be bored as hell and would appreciate visitors. Tina is so very appreciative of all that I do.
It is really hard trying to get caught up to speed on someone else's life and trying to take care of my own life, and my own businesses, plumbing problems, car problems,cell problems, etc. it can be overwhelming at times with no end in sight. My life is so extreme, in the past few months my hula business has been booming and I even have a website: http://partypop.com/Vendors/4109107.htm (shameless promotion). I'm going through all this serious heavy duty stuff with Tina and on the other end I'm doing all these parties and I'm center of attention. I guess it is good for me, so that I'm taken out of the mundane everyday business. I just finished a piece (book/play not sure) I was writing that I told Tina it was dedicated to her. When I told her I finished, after working on it for a year, she was very happy.
I've been working with Tina having her close her eyes and visualize her coming home party, the menu, the guest list, places she wants to travel to, clothes she wants to shop for. She spells out colors, textures, etc. I go thru magazines and have her pick things out she likes. When I do this kind of activity and as I leave she is in much higher spirits. It gives her hope.
My friend Diane says that right now, with Tina being unable to speak she is "The Secret Keeper"- so if there is anything you need to get off your chest and confess to somebody, go tell Tina.
The staff say that they've seen patients who receive visitors make the best improvements. I've heard from the nurses that they've seen people worse off than Tina and they have seen wonderful results in cases that were almost hopeless. Please think of her healthy, well and SASSY.
Thank you so much for your healing prayers - despite it all she looks pretty good. Skin condition is good, no bedsores, no pneumonia since she got over it from Kaiser days, urinary tract infections, but they say that happens when people have foley catheters.
10/17/06 This morning Tina and I had a meeting with 2 attorneys. They were really nice and had good stuff to report (I'm choosing not to broadcast) but when they left Tina was uncomfortable and we asked if she wanted pain meds, she kept mouthing stuff but I couldn't understand, I tried to spell things out and she finally spelled out "nothing" - that nothing was wrong with her physically. I asked, "Are you sad". She gave me the evil eye and mouthed "no", then I understood "mad", "I'm mad". She cried and I told her she had every right to cry and be mad as hell, but I have to go to work and I can't stay here with you. I told her I'd put a movie on and she didn't want it, so I put on "Grease" anyway, just in case she felt better later.
Deep, deep, deep down inside me, I fell Tina will recover.
Thank you, thank you, thank you for all the prayers and good wishes.
With Love from Tina's Big Sis,
Linda
posted by Lisa @ 2:54 PM
Monday, August 28, 2006
Aug. 26-27 Updates (kind of funny)
Hi everyone,
I just had to tell y'all the latest.
Sat 08/26: I'm going to do a little name dropping. Saturday night I went to one of my Buddhist meetings and I met a beautiful woman named Gigi. She turned out to be Herbie Hancock, the jazz pianist's wife (Herbie belongs to the same Buddhist organization that I do - but for any fans out there, I don't know him). Gigi heard me talking about Tina's accident and when I told her that Tina was on her way to work at Bristol Farms in Beverly Hills, she said, "I shop there." I described Tina and she said, "I know your sister." Gigi said, "I'm going to tell everyone at Bristol that I met you and that I know your sister." She also said she will pray for Tina.
When I went to visit Tina that night, I told her I met Gigi and that Gigi said she knows her she mouthed, "Wow!"
When Tina started working at Bristol Farms in Beverly Hills she used to call me with her star sightings of celebrities that she waited on as customers: Martin Short, Johnny Depp (I screamed), Samuel L. Jackson, the sexy grandma from "Who's the Boss", Katherine Helmond, who told Tina, "You know who I am, don't you?" Tina said, "Yes". and the woman went and gave Tina a big hug and also the woman from Frazier - the character with the stick up her butt, she saw her too.
Sunday 08/27: I went to visit Tina in the afternoon and as I was driving up so was Derek and his friend Emily and a few minutes later Lisa and Kevin showed up too! Without even planning it, the whole family ended up at the hospital.
As some of you know my son Derek is an actor and a character in his own right and he is always on! Derek goes in and starts teasing Tina and he wouldn't let up. Without even being able to speak Tina gave Derek a piece of her mind by silently mouthing off to him and making faces. Then when Lisa showed up they both teamed up on Tina, like they always do. But Tina held her own with those two. When she would mouth off, the kids would say, "Mom, what did she say?", then I'd go through the alphabet and spell out her insults. Tina even noticed Kevin lost a little weight since being married and she spelled out, "Don't you feed him?" Even my new son-in-law Kevin got in on the teasing action. It was just like old times when we are all together, a lot of teasing and joking and belly laughs.
Tina scared Lisa with that sound she makes on her ventilator sometimes. So I told the kids how when the sound startles me, Tina does it again on purpose! I can't remember which one of the kids said it but someone said the noise she makes sounds like a dragon. Then the kids where saying, "Tina make that dragon sound." Then Tina would make the sound again and she had all five us cracking up so loud. I laughed so much that I had phlegm and I think I should have been suctioned!!! With her sense of humor, Tina is still that wonderful, lovable Tina!!!
I've been going in everyday to massage her back because it makes her feel good. I get lotion and put my hand and arm as far down as I can on her back and she is loves it and when I'm done she yawns and is in the zone so I know it really relaxes her. It gives me hope because she does feel (yes Stacey Mitchell Suisuico, when Tina spelled "my butt", when she wanted to be moved, it does mean she feels! The brian stem injury she has is called Locked In Syndrome and she still feels pain but is unable to use her motor functions.
I spoke with my daughter Jessie, who lives in San Francisco yesterday and we were talking our dual roles with each other. Tina is my sister and also like my daughter, I'm 15 years older than her, and that Tina loves Jessie, Lisa and Derek so much that she is their sister-aunt. Tina is only 12 years older than Jess. Tina just lights up when my kids visit her.
These past few days I have a lot more hope for Tina's eventual recovery.
I get so many emails that I can't answer all, but I really appreciate all your loving thoughts & wishes.
If you can't visit, send me an email and I will read it to her.
I recently made a Medical Break Through: In the past 3 months I discovered the cure for allergies. Since Tina's accident, I no longer have allergies nor headaches due to allergy symptoms. The cure: crying, just cry whenever you feel like it - it really works!
Linda
I just had to tell y'all the latest.
Sat 08/26: I'm going to do a little name dropping. Saturday night I went to one of my Buddhist meetings and I met a beautiful woman named Gigi. She turned out to be Herbie Hancock, the jazz pianist's wife (Herbie belongs to the same Buddhist organization that I do - but for any fans out there, I don't know him). Gigi heard me talking about Tina's accident and when I told her that Tina was on her way to work at Bristol Farms in Beverly Hills, she said, "I shop there." I described Tina and she said, "I know your sister." Gigi said, "I'm going to tell everyone at Bristol that I met you and that I know your sister." She also said she will pray for Tina.
When I went to visit Tina that night, I told her I met Gigi and that Gigi said she knows her she mouthed, "Wow!"
When Tina started working at Bristol Farms in Beverly Hills she used to call me with her star sightings of celebrities that she waited on as customers: Martin Short, Johnny Depp (I screamed), Samuel L. Jackson, the sexy grandma from "Who's the Boss", Katherine Helmond, who told Tina, "You know who I am, don't you?" Tina said, "Yes". and the woman went and gave Tina a big hug and also the woman from Frazier - the character with the stick up her butt, she saw her too.
Sunday 08/27: I went to visit Tina in the afternoon and as I was driving up so was Derek and his friend Emily and a few minutes later Lisa and Kevin showed up too! Without even planning it, the whole family ended up at the hospital.
As some of you know my son Derek is an actor and a character in his own right and he is always on! Derek goes in and starts teasing Tina and he wouldn't let up. Without even being able to speak Tina gave Derek a piece of her mind by silently mouthing off to him and making faces. Then when Lisa showed up they both teamed up on Tina, like they always do. But Tina held her own with those two. When she would mouth off, the kids would say, "Mom, what did she say?", then I'd go through the alphabet and spell out her insults. Tina even noticed Kevin lost a little weight since being married and she spelled out, "Don't you feed him?" Even my new son-in-law Kevin got in on the teasing action. It was just like old times when we are all together, a lot of teasing and joking and belly laughs.
Tina scared Lisa with that sound she makes on her ventilator sometimes. So I told the kids how when the sound startles me, Tina does it again on purpose! I can't remember which one of the kids said it but someone said the noise she makes sounds like a dragon. Then the kids where saying, "Tina make that dragon sound." Then Tina would make the sound again and she had all five us cracking up so loud. I laughed so much that I had phlegm and I think I should have been suctioned!!! With her sense of humor, Tina is still that wonderful, lovable Tina!!!
I've been going in everyday to massage her back because it makes her feel good. I get lotion and put my hand and arm as far down as I can on her back and she is loves it and when I'm done she yawns and is in the zone so I know it really relaxes her. It gives me hope because she does feel (yes Stacey Mitchell Suisuico, when Tina spelled "my butt", when she wanted to be moved, it does mean she feels! The brian stem injury she has is called Locked In Syndrome and she still feels pain but is unable to use her motor functions.
I spoke with my daughter Jessie, who lives in San Francisco yesterday and we were talking our dual roles with each other. Tina is my sister and also like my daughter, I'm 15 years older than her, and that Tina loves Jessie, Lisa and Derek so much that she is their sister-aunt. Tina is only 12 years older than Jess. Tina just lights up when my kids visit her.
These past few days I have a lot more hope for Tina's eventual recovery.
I get so many emails that I can't answer all, but I really appreciate all your loving thoughts & wishes.
If you can't visit, send me an email and I will read it to her.
I recently made a Medical Break Through: In the past 3 months I discovered the cure for allergies. Since Tina's accident, I no longer have allergies nor headaches due to allergy symptoms. The cure: crying, just cry whenever you feel like it - it really works!
Linda
posted by Lisa @ 7:10 PM
Friday, August 25, 2006
August 25 Update
Aloha (I’ve been performing a lot of hula lately - it is that luau season),
From the bottom of my heart, I really want to thank all of you who visit Tina. The staff says she has the most visitors! She has nothing else to do, so your smiling faces and chit chat are her entertainment and her connection to the rest of the world. Remember, please sign in, so I will know who visits and it gives me something to talk about with her - thanks. It must be absolute hell to be in Tina’s position, but Tina maintains her sweet and graceful composure.
I know I write a lot of details, but I want to show ways I and the staff communicate with her plus some of the funny moments & and update on the trial. If any of you visit you can take a cue from how I communicate and what some of her needs are. If she's distressed, please call someone to help her. Thanks!
8/17/06 8:00 pm I talked to Jonathan, Respiratory Tech. Tina was sleeping and I didn't want to disturb her. I asked him about the speaking valve, it is called a passi muir valve. He said they are waiting for her infection to heal. He said it only is on in the day time so the patient can rest at night. They changed her trach tubing and if a patient has an infection, the infection can stay in the tubing. I came to know Jonathan last week, when I interrupted his lunch to suction Tina. He had just eaten a hamburger with onions and we laughed at how Tina crinkled her nose with stinky faces when he was working on her. He said, "Tina if I have to come and wake you, I'm just going to breathe on you." She gets a kick out of stuff like that.
8/18/06 I went to donate blood and they wanted me to read a book the size of a magazine and I said "No thanks", I put it down and went to wait my turn. A nurse marched over to me and said I had to read it, I said, I didn't feel like reading it that I could pretend to read it if she didn't mind and besides, I don't remember having to read anything the last time, then I told her I've been through kind of a lot lately and having to read so much stuff, I'm not reading this book. I told her about Tina and the nurse said (not in a very compassionate way and kind of abruptly) that I was having too much anxiety lately and it wasn't a good idea for me to donate blood. I left and went and sat under a tree and cried my eyeballs out. I am not a cry baby, but with all this stuff, who knows when I’m going to blow! About 15 minutes later my friend Dave came out and said he was rejected too so he broke me out of my crying jag and we just cracked up, the two Red Cross Rejects. It probably really was in my best interest.
Later, when we went to visit Tina, I talked to the nursing supervisor, Joann and she said Tina has an appointment with the neurologist next week.
Talked to the Director of Respiratory, Dwayne, what a nice, positive guy. He said when they changed her trach, there was an infection with pus. They are waiting for Tina to get more volume in her breathing so she can speak with the passi muir valve. He thinks she's showing improvement with more facial muscles moving and he thinks it could move on down. She's very expressive and the staff is understanding her more now without the collar. And he said as I left his office, "Miracles do happen!"
8/19/06 There is this guy who works at the facility, I think he's like an orderly. He has this long weird Spanish name, so I call him "G", I had met him once before. He came in today and says to Tina in a thick Latin Lover, Spanish accent, "Come on Tina, let's go Salsa dancing. Come on Tina, get out of bed. Tina, why are you so lazy? You are always laying in bed." Tina was rolling here eyes and kind of having a little fun with his joking and didn't seem to be bothered by what he was saying. Then he said "Ok, I come in my Mercedes Benz and you can drive my car." At that point, I took him outside and told him about the hit and run accident in case he didn't know. We went back into the room and he continued, "Tina, let's go salsa dancing." Tina mouthed "Nooooo!" kind of laughing. Then I said, "She's not really big on Salsa dancing, even before, but I'll go with you!" Tina mouthed to me, "You're bad". Then G said, in his thick accent, "Oooh, I know we go out, and then you meet someone else and then you leave me." Tina was tickled with his joking - this stuff is her entertainment right now.
8/20/06 The orderlies saw me coming in and was happy I was there to translate. She was distressed, so I said, ok, let's start from your head, does your head hurt? your neck? She blinked yes. I'm thinking the back of her neck, because of the surgery, but didn't ask about her throat. the problem was that her trach tubbing was messed up. She didn't want me to leave. I'm all talked out so I just massaged her hands, then stroked her hair like when she was a baby and we just look at each other. I realized that Tina looks at me as a parent.
8/21/06 I had so many phone calls to make and paperwork on Tina's behalf.
When I visited, Tina was distressed and she spelled FAN & MOVE. The nurse and I realized that her fans were turned off, and they re-positioned her. She also spelled HEAR and I'm thinking that it was her heart, but she couldn't hear the radio.
8/23/06 I received phone calls from the D.A. and the Detective. The guy's attorney wants to plea bargain. There is another hearing this Friday, but the D.A. said nothing will happen. They are going for restitution. She said a restitution specialist will contact me. She does want my input on the case. The detective said that the guy most likely will not get prison time becuase he has no prior record. If he gets jail time, he will only serve 10% of the time due to jail overcrowding. The D.A. was hand picked for Tina's case and she has a good track record. He could get, his drivers license suspended or restricted, community service, but most of the emphasis will be on restitution. He asked me if Tina has had pneuomonia or any infections. I told him 3 times plus a bladder infection and that she was becoming resistant to the antibiotics. From his point of view, justice will not be anything close to what he deserves. I should ask the DA that in the event Tina's life is shortened by an infection or other complication that her organs might not tolerate that his sentence is enhanced in the future. He told me to make sure that I emphasize to the DA that she is not out of danger and after 3 months she is not much better. He told me to take pictures and blow them up and send to the D.A., they need to see what he did.
8/24/06 The nurse said that the neurologist recommended that Tina see the neurosurgeon who did the surgery and to put the cervical collar back on until then. Even though the medical director of the facility felt the CT scan looked good. The cervical collar will stay on for a few more weeks because the neurosurgeon is booked. Tina was uncomfortable and spelled MY BUTT. They had just moved her, but she still needed repositioning. When she was comfortable, she mouthed, "I love you". She is so appreciative of even the tiniest gesture toward her comfort. I explained the situation about the cervical collar to Tina and she mouthed "Shit". But she was still in a good mood.
From the bottom of my heart, I really want to thank all of you who visit Tina. The staff says she has the most visitors! She has nothing else to do, so your smiling faces and chit chat are her entertainment and her connection to the rest of the world. Remember, please sign in, so I will know who visits and it gives me something to talk about with her - thanks. It must be absolute hell to be in Tina’s position, but Tina maintains her sweet and graceful composure.
I know I write a lot of details, but I want to show ways I and the staff communicate with her plus some of the funny moments & and update on the trial. If any of you visit you can take a cue from how I communicate and what some of her needs are. If she's distressed, please call someone to help her. Thanks!
8/17/06 8:00 pm I talked to Jonathan, Respiratory Tech. Tina was sleeping and I didn't want to disturb her. I asked him about the speaking valve, it is called a passi muir valve. He said they are waiting for her infection to heal. He said it only is on in the day time so the patient can rest at night. They changed her trach tubing and if a patient has an infection, the infection can stay in the tubing. I came to know Jonathan last week, when I interrupted his lunch to suction Tina. He had just eaten a hamburger with onions and we laughed at how Tina crinkled her nose with stinky faces when he was working on her. He said, "Tina if I have to come and wake you, I'm just going to breathe on you." She gets a kick out of stuff like that.
8/18/06 I went to donate blood and they wanted me to read a book the size of a magazine and I said "No thanks", I put it down and went to wait my turn. A nurse marched over to me and said I had to read it, I said, I didn't feel like reading it that I could pretend to read it if she didn't mind and besides, I don't remember having to read anything the last time, then I told her I've been through kind of a lot lately and having to read so much stuff, I'm not reading this book. I told her about Tina and the nurse said (not in a very compassionate way and kind of abruptly) that I was having too much anxiety lately and it wasn't a good idea for me to donate blood. I left and went and sat under a tree and cried my eyeballs out. I am not a cry baby, but with all this stuff, who knows when I’m going to blow! About 15 minutes later my friend Dave came out and said he was rejected too so he broke me out of my crying jag and we just cracked up, the two Red Cross Rejects. It probably really was in my best interest.
Later, when we went to visit Tina, I talked to the nursing supervisor, Joann and she said Tina has an appointment with the neurologist next week.
Talked to the Director of Respiratory, Dwayne, what a nice, positive guy. He said when they changed her trach, there was an infection with pus. They are waiting for Tina to get more volume in her breathing so she can speak with the passi muir valve. He thinks she's showing improvement with more facial muscles moving and he thinks it could move on down. She's very expressive and the staff is understanding her more now without the collar. And he said as I left his office, "Miracles do happen!"
8/19/06 There is this guy who works at the facility, I think he's like an orderly. He has this long weird Spanish name, so I call him "G", I had met him once before. He came in today and says to Tina in a thick Latin Lover, Spanish accent, "Come on Tina, let's go Salsa dancing. Come on Tina, get out of bed. Tina, why are you so lazy? You are always laying in bed." Tina was rolling here eyes and kind of having a little fun with his joking and didn't seem to be bothered by what he was saying. Then he said "Ok, I come in my Mercedes Benz and you can drive my car." At that point, I took him outside and told him about the hit and run accident in case he didn't know. We went back into the room and he continued, "Tina, let's go salsa dancing." Tina mouthed "Nooooo!" kind of laughing. Then I said, "She's not really big on Salsa dancing, even before, but I'll go with you!" Tina mouthed to me, "You're bad". Then G said, in his thick accent, "Oooh, I know we go out, and then you meet someone else and then you leave me." Tina was tickled with his joking - this stuff is her entertainment right now.
8/20/06 The orderlies saw me coming in and was happy I was there to translate. She was distressed, so I said, ok, let's start from your head, does your head hurt? your neck? She blinked yes. I'm thinking the back of her neck, because of the surgery, but didn't ask about her throat. the problem was that her trach tubbing was messed up. She didn't want me to leave. I'm all talked out so I just massaged her hands, then stroked her hair like when she was a baby and we just look at each other. I realized that Tina looks at me as a parent.
8/21/06 I had so many phone calls to make and paperwork on Tina's behalf.
When I visited, Tina was distressed and she spelled FAN & MOVE. The nurse and I realized that her fans were turned off, and they re-positioned her. She also spelled HEAR and I'm thinking that it was her heart, but she couldn't hear the radio.
8/23/06 I received phone calls from the D.A. and the Detective. The guy's attorney wants to plea bargain. There is another hearing this Friday, but the D.A. said nothing will happen. They are going for restitution. She said a restitution specialist will contact me. She does want my input on the case. The detective said that the guy most likely will not get prison time becuase he has no prior record. If he gets jail time, he will only serve 10% of the time due to jail overcrowding. The D.A. was hand picked for Tina's case and she has a good track record. He could get, his drivers license suspended or restricted, community service, but most of the emphasis will be on restitution. He asked me if Tina has had pneuomonia or any infections. I told him 3 times plus a bladder infection and that she was becoming resistant to the antibiotics. From his point of view, justice will not be anything close to what he deserves. I should ask the DA that in the event Tina's life is shortened by an infection or other complication that her organs might not tolerate that his sentence is enhanced in the future. He told me to make sure that I emphasize to the DA that she is not out of danger and after 3 months she is not much better. He told me to take pictures and blow them up and send to the D.A., they need to see what he did.
8/24/06 The nurse said that the neurologist recommended that Tina see the neurosurgeon who did the surgery and to put the cervical collar back on until then. Even though the medical director of the facility felt the CT scan looked good. The cervical collar will stay on for a few more weeks because the neurosurgeon is booked. Tina was uncomfortable and spelled MY BUTT. They had just moved her, but she still needed repositioning. When she was comfortable, she mouthed, "I love you". She is so appreciative of even the tiniest gesture toward her comfort. I explained the situation about the cervical collar to Tina and she mouthed "Shit". But she was still in a good mood.
posted by Lisa @ 4:10 PM
Wednesday, August 23, 2006
August 17 Update
Hi everyone,
Tina was changed to room 7C at Country Villa, 17th & Grand in LB, 1 block west of Termino and just below PCH. If you go visit, when you go in to the facility go to the right - that is the sub-acute unit.
Thanks for your prayers and good wishes. I hope it is not too much that I put in all that I feel in this situation, but my feelings are the truth of what I'm experiencing. People have been wanting and update so here goes:
07.27.06 After I sent that last "Tina update " email, I broke down that night. I ran into an old friend, my contractor, Alfred and he didn't know about Tina so I told him. He was telling me about his 83 year old dad dying last year and having to make those life/death decisions and I told him, that is what I have to do right now. Alfred questioned himself, was he holding on to his dad when perhaps it was his dad's time to go and then I unexpectedly broke down crying (and I hate crying with people around) it was like a flood came out of me. Sometimes I get those thoughts that she may die and am I holding on too tight? But if that accident didn't kill her, why should pneumonia or a bedsore, ya know? I hadn't told anyone out loud what I feel sometimes, until talking to Alfred that night. Good thing Alfred hugged me and my face was in his chest cuz, it muffled my wails. I think I needed a hug. It is like those dark thoughts are my secret.
It was good for me to get out those pent up feelings before I went to see Tina. She looked pretty damn good and I feel her spirit was good. She was mouthing something to me and I was mimicking her trying to figure it out so I said, "Booty" you want some booty?" And she just looks at me like "oh my god you little shit, stop messing around". I can translate eye her language now, or just know what she would say. I was able to decipher that her friends Tim and Jack came to see her and they brought a TV for her and installed it on a high shelf. The nurses had mentioned a cop came to visit her and I remember her telling me Tim had a cop friend. He must have been hunky, cuz all the nurses were in a tizzy about "The Cop" - or is it just guys in uniform?
It is touch and go, but most of the time I'm feeling pretty good, I'm praying (I chant) so much. I remember this great Buddhist leader I had, Mr. Osaki, who used to tell me, "if it is that bad, what's next has gotta be that good." And so far he has been right on.
8/2/06: Even though Tina is more stable, I do get phone calls from the hospital that she has pneuomonia, again, or that now she has a bladder infection - and sometimes she is resistant to the antibiotics. I'm waiting for the results of the CT scan on her neck to see if they will remove the cervical collar. I'm scared - I don't want bad news. No bad news.
08/03/06: When Tina is distressed her eyes cross. I pray to be a healing presence. She spelled out, "Don't leave." I started to cry (the first time in front of her) and told her to be positive and she rolled her eyes. I said, "Don't you give up on you. I'm not going to give up on you! I need your help, Tina, we have to do this together." I started to tell her some "chisme" (gossip in Spanish) and I made her laugh. I told her "I love you" and she mouthed back, "I love you too." I told her, "Our love is what is going to get us through. We've been through hell and back with mom (her nuttiness) and our brother (his murder) and we will come out winning in an unexpected way."
08/04/06: Every time I visit these past few days Tina is tearful. Especially when a nurse suggested that Tina get psychiatric counseling. She burst out crying. I don't think she even remembers what happened, she didn't see it coming. So I told her that I will ask her periodically if she wants counseling and when she is ready they we will get someone to talk to her. I don't know what good it will do when all she can do is listen and can't express her feelings.
The nurse said some of the staff call her "Precious".
I realized that she has bad days and good days, just like us. If any of you visit please pray or center yourself before your visit. I pray for her to be calm, peaceful, disease free, pain free, infection free, phlegm free and sugar free (just kidding). In the last 10 days her morphine has been reduced to almost nothing. She never complains of pain and also her blood sugar was really good and one nurse told me she didn't even need insulin for 2 days.
8/5 & 6: On the weekends I go to my church's community center in LA, called the LA Friendship Center and I go and chant a few hours for Tina. It is kind of cool because before and afterwards I have been going on little adventures in LA. There are so many ethnic neighborhoods that I am discovering. It feels good not to hear people speak English - so many foreign tongues - that way I don't hear any bad news! I can't take a whole lot of bad news anymore. I've heard so many ugly things, so many terrible things that have happened to Tina and I see those images and I can't stop them, either when I'm awake or in a nightmare - it is getting better though - I just cringe when I see these images. I guess it is post traumatic stress, as if I had been in the accident, well actually I was broadsided with Tina's accident. I like feeling anonymous, no one knows me and no one knows what I'm going thru. I even went to visit the La Brea tarpits and that was cool.
08/11/06: The nursing supervisor told me that they took the cervical collar off this morning. When I asked about Tina getting that voice box thingy, she said that there was some irritation and they were going to wait and that Kaiser had put in a different kind of trachestomy than they have equipment for.
In the afternoon I had a 2 hour meeting with an estate attorney, his associate and the civil attorney (Tina's got attorney's up to my eyeballs) so that I can become Tina's conservator. Wish I didn't have to do this. I made them laugh when I said, "I just don't want bad news."
8/12/06: Tina looks good without the collar, more comfortable. I was afraid to see her without it. I combed her hair and a lot of it came out - those who know her know what beautiful hair she has, it made me sad to see the gobs come out in the comb. I straightened up her room, massaged her feet and hands - it is hard to see when they are just limp - I want to will them to move. I was moving a tube that was kind of stuck in a drawer and a little plastic fell down, like a clip or something, then Tina made a funny movement with her mouth and I bolted out the door to get the nurse, I thought I did something to the tube, just at that moment the respiratory tech came in and said, "oh she just yawned". What a nerd I am, and Tina rolled her eyes at my hysterics. Maybe I had bored her and she yawned.
8/17/06: Tina has had a pretty stable week. She's been in a pleasant mood, she seems more comfortable with her neck. I've noticed her swallow more, before she needed to be suctioned. And, I haven't gotten any phone calls from the hospital, whew!!!! All in all she looks pretty good, and she is resting, finally.
Mahalo,
Linda
Tina was changed to room 7C at Country Villa, 17th & Grand in LB, 1 block west of Termino and just below PCH. If you go visit, when you go in to the facility go to the right - that is the sub-acute unit.
Thanks for your prayers and good wishes. I hope it is not too much that I put in all that I feel in this situation, but my feelings are the truth of what I'm experiencing. People have been wanting and update so here goes:
07.27.06 After I sent that last "Tina update " email, I broke down that night. I ran into an old friend, my contractor, Alfred and he didn't know about Tina so I told him. He was telling me about his 83 year old dad dying last year and having to make those life/death decisions and I told him, that is what I have to do right now. Alfred questioned himself, was he holding on to his dad when perhaps it was his dad's time to go and then I unexpectedly broke down crying (and I hate crying with people around) it was like a flood came out of me. Sometimes I get those thoughts that she may die and am I holding on too tight? But if that accident didn't kill her, why should pneumonia or a bedsore, ya know? I hadn't told anyone out loud what I feel sometimes, until talking to Alfred that night. Good thing Alfred hugged me and my face was in his chest cuz, it muffled my wails. I think I needed a hug. It is like those dark thoughts are my secret.
It was good for me to get out those pent up feelings before I went to see Tina. She looked pretty damn good and I feel her spirit was good. She was mouthing something to me and I was mimicking her trying to figure it out so I said, "Booty" you want some booty?" And she just looks at me like "oh my god you little shit, stop messing around". I can translate eye her language now, or just know what she would say. I was able to decipher that her friends Tim and Jack came to see her and they brought a TV for her and installed it on a high shelf. The nurses had mentioned a cop came to visit her and I remember her telling me Tim had a cop friend. He must have been hunky, cuz all the nurses were in a tizzy about "The Cop" - or is it just guys in uniform?
It is touch and go, but most of the time I'm feeling pretty good, I'm praying (I chant) so much. I remember this great Buddhist leader I had, Mr. Osaki, who used to tell me, "if it is that bad, what's next has gotta be that good." And so far he has been right on.
8/2/06: Even though Tina is more stable, I do get phone calls from the hospital that she has pneuomonia, again, or that now she has a bladder infection - and sometimes she is resistant to the antibiotics. I'm waiting for the results of the CT scan on her neck to see if they will remove the cervical collar. I'm scared - I don't want bad news. No bad news.
08/03/06: When Tina is distressed her eyes cross. I pray to be a healing presence. She spelled out, "Don't leave." I started to cry (the first time in front of her) and told her to be positive and she rolled her eyes. I said, "Don't you give up on you. I'm not going to give up on you! I need your help, Tina, we have to do this together." I started to tell her some "chisme" (gossip in Spanish) and I made her laugh. I told her "I love you" and she mouthed back, "I love you too." I told her, "Our love is what is going to get us through. We've been through hell and back with mom (her nuttiness) and our brother (his murder) and we will come out winning in an unexpected way."
08/04/06: Every time I visit these past few days Tina is tearful. Especially when a nurse suggested that Tina get psychiatric counseling. She burst out crying. I don't think she even remembers what happened, she didn't see it coming. So I told her that I will ask her periodically if she wants counseling and when she is ready they we will get someone to talk to her. I don't know what good it will do when all she can do is listen and can't express her feelings.
The nurse said some of the staff call her "Precious".
I realized that she has bad days and good days, just like us. If any of you visit please pray or center yourself before your visit. I pray for her to be calm, peaceful, disease free, pain free, infection free, phlegm free and sugar free (just kidding). In the last 10 days her morphine has been reduced to almost nothing. She never complains of pain and also her blood sugar was really good and one nurse told me she didn't even need insulin for 2 days.
8/5 & 6: On the weekends I go to my church's community center in LA, called the LA Friendship Center and I go and chant a few hours for Tina. It is kind of cool because before and afterwards I have been going on little adventures in LA. There are so many ethnic neighborhoods that I am discovering. It feels good not to hear people speak English - so many foreign tongues - that way I don't hear any bad news! I can't take a whole lot of bad news anymore. I've heard so many ugly things, so many terrible things that have happened to Tina and I see those images and I can't stop them, either when I'm awake or in a nightmare - it is getting better though - I just cringe when I see these images. I guess it is post traumatic stress, as if I had been in the accident, well actually I was broadsided with Tina's accident. I like feeling anonymous, no one knows me and no one knows what I'm going thru. I even went to visit the La Brea tarpits and that was cool.
08/11/06: The nursing supervisor told me that they took the cervical collar off this morning. When I asked about Tina getting that voice box thingy, she said that there was some irritation and they were going to wait and that Kaiser had put in a different kind of trachestomy than they have equipment for.
In the afternoon I had a 2 hour meeting with an estate attorney, his associate and the civil attorney (Tina's got attorney's up to my eyeballs) so that I can become Tina's conservator. Wish I didn't have to do this. I made them laugh when I said, "I just don't want bad news."
8/12/06: Tina looks good without the collar, more comfortable. I was afraid to see her without it. I combed her hair and a lot of it came out - those who know her know what beautiful hair she has, it made me sad to see the gobs come out in the comb. I straightened up her room, massaged her feet and hands - it is hard to see when they are just limp - I want to will them to move. I was moving a tube that was kind of stuck in a drawer and a little plastic fell down, like a clip or something, then Tina made a funny movement with her mouth and I bolted out the door to get the nurse, I thought I did something to the tube, just at that moment the respiratory tech came in and said, "oh she just yawned". What a nerd I am, and Tina rolled her eyes at my hysterics. Maybe I had bored her and she yawned.
8/17/06: Tina has had a pretty stable week. She's been in a pleasant mood, she seems more comfortable with her neck. I've noticed her swallow more, before she needed to be suctioned. And, I haven't gotten any phone calls from the hospital, whew!!!! All in all she looks pretty good, and she is resting, finally.
Mahalo,
Linda
posted by Lisa @ 12:21 PM
