Everybody Loves Tina

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

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