Vi's First Outdoor Shower!

Just wanted to post this beautiful photo from Vi's first outdoor shower since she has been home! How beautiful and refreshing does it look?!?

HOME SWEET HOME

It's been a little more than two months that I have been home adjusting to my new way of life with a vent to breathe for me, a G-tube that takes in all my nourishment (all of one flavor every day) and eight caregivers that divide the hours of the month so that I can have someone with me 24/7.

Can you imagine having someone with you 24/7 and doing everything for you because you are not able to move. Your body's muscles have deterioated and once your body is put down to bed it becomes heavy and then numb as the circulation of your body slows down and then there is potential for skin break down on any bony prominence like your sit bones, tail bone, elbow, back bone or anything that sticks out. This is where the care giver come in to massage, move and do some range of motion to all extremities. This happens approximately every 2 hours. Another importance of comfort are the positioning of my 3-4 pillows can determine how well I sleep. There have been a few nights where I've had a new care giver who did not know about pillow positioning and could not read lips. We were really in trouble then!

I am very thankful for my team of caregivers (Glizza, Andrea, Keith, Keisha, Renee, Sierra, and Michelle. Backups are Natalie, Daniel). Also to Corey of Care Alternatives and staff who have instructed our care givers in the many nursing aspects for care giving and the vent.

I have to thank Jan for his hard work and persistence in obtaining the best care and fixing everything at home for me! Jan totally ROCKS! I LOVE YOU HONEY!

All in all, it's been a tough road, however I am blessed to be here at home with my family and friends.

Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi

Vi’s adjustment to her new life with the vent at home is starting to settle in, as is the case with all of us taking care of her.

She has relatively few doctors appointments. The doctors either come to the house or visit her via the camera/internet system we have.

We now have a good group of eight caregivers that provide 24 hour a day comfort for Vi. The caregiving is very intense in that her mouth is suctioned about every 5± minutes. Her lungs are suctioned about once an hour. She also requires constant moving/shifting by the caregiver as she can’t move herself. Toileting, bathing, etc. is all handled in the bed. She is basically in her bed 24 hours a day, 7 days a week except for a few occasions.

Getting out of the bed is somewhat complicated and involves 2 or 3 people. We use a hoyer lift to raise her. It’s not possible to lift her up by hand due to her connection to the feeding tube and ventilator. As other aspects of her care are becoming second nature, we intend to work on getting her out of the bed more often.

We did have a minor emergency situation last week when the ventilator stopped working. The caregiver, Kisha, promptly recognized the situation, got me to help her and began to bag Vi (use the ambu bag to manually provide air to her lungs). After a few minutes, Kisha found the air leak problem. We fixed it and told the emergency people that were on their way that everything was alright.

Another event involved taking Vi to the emergency room at Queen’s Hospital to have her trach switched. The old one was malfunctioning. Getting her ready, out the door and to the hospital required 5 of us as we had to go with vent, suction machine, backup battery, power chair, ambu bag and other related equipment. All went well. Vi now has a new trach.

Vi is using her computer and connection to the internet more and more. However, she still is not using the Dynavox machine which can speak for her. Communication is pretty much handled by watching her lips as she forms words or letters. Some of us are better/worse than others at understanding what she means.

In summary, Vi/we have made a lot of progress since she left the hospital two months ago. Her spirits remain good, mitigated somewhat by the very difficult/uncomfortable situation.

So much for now.

Same, Same, But Different

It's been months since I have blogged! A lot have happened during that time up to the present time. I feel like the same person, but then again different. It's like in Bali where there are so many copy cats. Really, they can copy just about anything. So, when in Bali looking for that special something and something similar pops up. We say "Same, same, but different." And that is how I feel.

First of all I have to thank my God, my family, friends and others for their support, prayers, flowers , cards and love while in the hospital. I am now home settling down in my new bed and new care givers. (Believe it or not I am being bagged with the AMBU bag to practice in case of an emergency and the vent fails to work as I write this.) On the day of my birthday party I was rushed to the emergency room for respiratory distress by Jan, Malia, Spike, Natalie and Renee. . Jan noted that I was acting very lethargic and used a pulse oxyimeter to measure the oxygen in my blood which happened to be in the 80's which is not a good sign and away we went to Queens Medical Center. While checking into the emergency room, I must have lost it because I don't remember anything happening. When I awoke, I was in the respiratory CCU feeling groggy, in pain and something was sticking out of my mouth.
After a few days a traecheostomy was done and a vent hooked up. The three week stay at the hospital was not the best. It's so much better to be in your own surroundings. I now lie in my bed attached to my vent for the air I breath and I sometimes ask myself if this was the right choice! @#!

I thank the Lord for all His Blessing and for giving me another opportunity to life!

I am the same person but different!

Good nite Bella, good nite Violet and good nite Spike! Nana loves you all!
Aloha and God Bless
vi

ALL THINGS ARE POSSIBLE THROUGH CHRIST WHO STRENGTHENS ME

Vi Update

I wanted to write a quick update on Vi. She is still recovering at Queen's Hospital while her care team is put in place and trained on how to operate the ventilator. We're busy getting the house organized and set up which includes ordering all of the equipment we'll need. Vi is scheduled to be discharged on Monday the 22nd so this is a very busy week. Please email me if you would like to know her room number to visit. She loves the company!

Vi Update

Last Sunday, Malia and Jan took Vi to the emergency room when they observed that she had breathing difficulties. She was intabated (a tube inserted into her throat so she could breathe) and placed in the ICU (Intensive Care Unit). This morning (Wednesday), she had the tracheostomy operation. The surgeon performing the operation was hand picked and had completed the New Zealand Ironman Triathlon with Vi over 6 years ago! The anesthesiologist was also a co-athlete with Vi who had volunteered for the operation. It all went well.

All of this was in accordance with Vi’s wishes. She now can fully recline to sleep. Her body is getting all the oxygen she needs without any concern for CO2 buildup.

She will likely be at Queen’s Hospital for a number of weeks while preparations are made for her home care.

She is surrounded by her family. We will keep you posted on her progress.

Never a dull moment!

Its been about two weeks since our race. There are a few people I would like to recognize who completed the race. First there is Pooky (Trystan Wong) a 7th grader at Kamehameha school who did the race as a class project. I thought how compassionate he is to learn all about ALS and motor neurons for his class project and then, there was Chad who has a muscular dystrophy disease and completed the race happily with his mother. Both of them filled my heart with joy so thank you thank you thank you!!!

Since we last blogged we have had tons of visitors. Besides our regular friends that comes to visit, I have had my college classmate Lei come to visit me from California. It was fun catching up on 25 years of absence. Crazy but Fun! Then their was Rosa who happens to be at a conference in Kona and found out about my situation. She promptly found my number, called me and flew over for the day to spend some girl time after not seeing each other for 15 years. It seems like a day has not passed us by as we picked up our friendship from way back then.

Wow Lau lau!

Share the care, Violets Web, is finally coming to fruition. Last week we had Sandra come over to give me a massage and ouh was it nice! We are expecting another massage therapist to come this week. We also had Fran prepare some food for us and the caregivers. Fran surprised us with a delicious risotto and salmon dish. Thank you to Sandra and Fran who is starting to spin the web. Thank you also to Bev from the Big Island who came over with her daughter Carlee to spend the weekend with us. If any of you have any questions about share the care please call Natalie at 258-9388.

Three weeks has past since getting the G-Tube. It has been a slow getting used to the tube feedings. I take in approximately 900 calories of tube feeding and then eat between 500-600 calories by mouth. I did not realize that I would have to eat all day to get in enough nourishment. We are still adjusting the amount and time of each tube feeding and sometimes I get a little nauseous or I feel sick to my tummy. Hopefully we will be able to resolve this problem soon. My gastro doctor said the peg looks beautiful and to return in one year. Whew!!!! We will be getting back in the water in a couple of weeks so be ready water people!

This Thursday we will not be having swim day but, we will have tea and reading by Bill and Punkin at 10:30 am here at my house. Come up and join us to all my swim friends and anyone else.

On the last note I want to share that Daniel made the cover of the new Surfing Magazine that is coming out soon.

You would never guess who helped me with today's blog. GLIZZA! She is covering for Malia, Spike and Daniel today and will leave back to Bali this week.

Good Night Bella! Goodnight Ruby! Goodnight Spike! I LOVE YOU!

God Bless You All!

Aloha,

VI