Party Party Party

We had a fabulous party today for me and Rhea, the house Libras. Peggy had very specific ideas about how she wanted her room decorated for the party. She directed Karen, Marvel, and Kelly over the past two days and had them running around all over the place...Life with Peggy is like a big scavenger hunt!

Karen and Hanna spent all morning decorating the room. They wouldn't even let us in there! We finally were allowed to enter at 12:30 and it was FABULOUS! There were pink twinkly lights around the door and a table beautifully set with Peggy's fine china! They had even set up a chocolate fountain.

We picked Indy up early from school so that she could enjoy the festivities. She's a party girl just like her Puna. We had fun eating and eating and eating! Then we got to open all of our wonderful gifts. It was a perfect party. Thank you to all who helped make it happen!

Indy is now doing her homework in Peggy's room. So cute. And, yes, preschoolers now have homework. We still have the chocolate fountain set up to help Lolo through her shift so come by and dig in if you're in the area!

Happy Birthday to Me!!!

So it is my birthday today! And tomorrow, us office gals are celebrating with a little lunch. It is Rhea's birthday on October 1st, so we are doing the combo birthday celebration.

I'm off to pick up Indy and meet Eric for dinner, so I don't have much time to blog right now. I really want to share all about how amazing and wonderful this past week has been with Leslie and Stuart and I promise to spend more time on this topic soon, but until then, just a few medical updates...

We were totally out of tons of supplies, but our savior Cathy picked a bunch of stuff up at HCA and dropped them off - Baza, saline, gloves, etc. They only had large gloves, but we can order some medium ones as soon as they are in. When Cathy was here Peggy asked her to check her lungs which she did. After some deep suctioning they sounded great.

I'm off and running - I'll post again soon!

"Peggy with Love" at 5pm

I've been hearing reports that the documentary is going to show at 5pm instead of 5:30...we'll be here from about 4:30ish to watch it! We're also taping it, so we should have copies here at the house soon...

Nurse Cathy and HPU Doc KHNL Special Tomorrow

Cathy came by today to do trach care. She also gave Peggy a flu shot and checked the cuff. There should be a good 16 CCs of air in there right now. Basically HCA is just inflating the cuff at night and then if their is any cuff leakage during the day, HCA staff comes back in at night or in the morning and they can fill it back up. We were out of a few supplies like normal saline and Baza cream. I called in the order to HCA.

Remember, we're planning to watch the HPU Documentary KHNL Special here at the house tomorrow. The show starts at 5:30 so we'll probably gather around 4:30 or 5ish and have some pupus to nibbles on.

Leslie

I have intentionally put off blogging about the following subject to give everyone involved their due respect and privacy. But I know that all of you have been waiting for this post and the time has come! I am excited to finally share the story of Leslie. Not that this is a secret around the house - it is pretty much all we have been talking about for months!

Peggy has shared with many of you that a couple of years before the birth of Eric, she had a daughter that she gave up for adoption. To make a very long story short, 6 months ago a detective that we hired found her. Her name is Leslie and she currently lives in Rhode Island.

Leslie and Peggy have been communicating by letter and email. On Tuesday, Leslie and her husband Stuart arrived in Honolulu. They planned a trip here specifically to meet Peggy (and Eric too). Eric and I had a lovely dinner with them Tuesday night. Eric told Leslie that he has always wanted a sister. It was really amazing to see them meet for the first time.

On Wednesday, Leslie came to the house and met Peggy for the first time since she was adopted 38 years ago. We had Marvel on shift which made communication go very well. All I can say is that seeing Leslie and Peggy meet and make eye contact for the first time brought tears to all of our eyes. It was such a special moment. I swear I could feel Peggy's heart about to burst.

They spent the day talking and learning about each other. Leslie got the chance to meet some of the Peg's Legs, Elroy, Jason...Yesterday Eric and his friend Chance took Leslie and Stuart canoe surfing at Kaimana. They had such a great time!

Then last night we had dinner here at the house. Leslie and Stuart came, Jason brought the girls, Marilyn came by, my mom and dad came, Rhea and KC stopped by (Rhea was instrumental in finding Leslie and was the one who actually spoke with her before any of the family did) - it was so much fun! Lolo was on shift (she took the great photo above). Indy, Jade, Sawyer, and Cian ran around the house like crazy spider monkeys...it was a fun and full house - Leslie asked if it was always like this and we were like, "are you kidding? This is a mellow Chun gathering! We're trying to break you in easy! We're not even in costume tonight!"

As I write this, I feel like I'm not doing a good job of expressing how momentous, amazing and magical this whole thing is. I think it really hit me when Eric and Leslie stood on opposite sides of Peggy's chair for a photo. There they were, Peggy's TWO children. Wow.

But beyond that...Leslie is just so cool! She and Stuart are the nicest people and they just fit right in. It is as if we have known them forever. It is so nice to be past the initial nervousness and the anticipation of the unknown...into a more relaxed, having fun and "getting to know you" place. Leslie is coming by to share some photos with Peggy today and we are planning some more beach time this weekend.

It has just been such a joy to meet Leslie and Stuart. We have all been anticipating this moment and I want to assure all of you that it has all worked out better than we could have ever imagined. Peggy is happier than I have seen her in a long time. And maybe "happier" is the wrong word...she just seems calmer...more AT PEACE. It's a beautiful thing.

Tuesday Update

I've been fighting a cold since Friday night (compliments of Indy and Sawyer who have been rubbing their hanabada noses all over the place), but I'm feeling much better today. It didn't get in the way of me having a great weekend. I got to spend Saturday night out at Koolina with a couple of my girlfriends celebrating our birthdays. So fun!

I've been working on scheduling and have had a couple interviews. Matila's training went well last night. She will be training again on Saturday night. I think she's going to be great. I'm also waiting to hear back from Attention Plus who might have someone for us.

Today we got a visit from Elroy and Peggy's niece Gigi and her husband Clar. They live in Chicago. They are very into Indian culture and have an Indian music store (with a Hawaiian music section!) and they also do Sitar music performances. Very cool.

Peggy had her doctor visit today, but there isn't much to report. They are checking with Respiratory regarding the small leakage we are seeing with the trach. Dr. Davis was not really worried at all about this issue.

Marvel and her Aunty are here cleaning today. It smells so clean!

One last thing - below you'll see some photos from Peggy's little adventure with Sonia, Hanna, Marvel, and Karen. They said it was amazing. They got to see aerialists and capoeira performances - all in this guy's living room! Enjoy

OK, gotta go and take the kids to swim lessons.

Scheduling and Upcoming Events

I've been busy busy busy working on our scheduling issues. I have called tons of agencies and only 3 of them might have people available. I have had a great response to the Craiglist ad. However, none of the applicants have vent experience, so we'll have to do some intensive training, but it could work. I have interviews set up next week.

We had a great interview today with a woman named Matila that Lisa met at the vent training last week. She is wonderful and we felt great about her instantly. She's new to the vent, so she'll need some training, but she is sharp and enthusiastic and very sweet. We have her training with Eric this coming Monday night. She can do overnights which is great.

HCA Eric read the blog and offered to ask around to find us some help. Thanks Eric! The best news is that Michelle called and offered to take next Wednesday and then the following Monday and Tuesday, which leaves us with only one hole in the schedule next week and gives us some time to train someone. Yay! Thanks Michelle! You both are lifesavers.

So things are looking great and I'm feeling less anxious about this situation. Thanks for all of your positive energy and prayers.

Peggy has so much going on...I just worked on filling out her calendar and it is packed! She has an outing this weekend with Sonia, Marvel, and Hanna. They are taking her to some crazy show down the road...something with aerialists and other performances. It is so close that she can just wheel down. Can't wait to see the photos.

Next Saturday, the 22nd, KHNL will air the documentary. We want to do a little viewing party here for all you Legs...we thought it might be fun to all watch it together. The HPU students will be joining us. It airs at 5:30, so we'll shoot for around 5pm. I'll post again about this...

The first weekend in October, Peggy will be going to the Chinese Chamber of Commerce Show at the Blaisdell where we will be selling her artwork...Then she has book signings at Borders the next 2 Saturdays! The first weekend in November is a book launch at Na Mea Hawaii at Ward Warehouse. Can you believe it - Peggy on an island book tour!

Photos from The Hawaii Woman Expo

See the photos from the show at http://pegslegs.shutterfly.com - you can also get there by clicking the link on this page...to the left, under "links", below my Meez...

This was a fabulous show...great energy and a lot of fun. You'll see photos of Karen "working hard" at the massage chair booth next door. You'll also see photos of Na Leo Lani singing to Peggy. On Sunday I brought the kids down to visit and represent their Puna. I took them to watch the celebrity pet fashion show - that's Jordan Segundo with his chihuahua in a speedo (the dog, not Jordan). We were featuring Peggy and Shelly's new book, "The Watercolor Cat". Doesn't the book look great? Boo is surely smiling up there in Kitty Heaven.

IMPORTANT

I need to let everyone know that we are dealing with a very serious situation regarding our overnight shift scheduling. As I mentioned in a previous post, both of our main HCA nurses, Eric and Michelle, are taking time off this month and next month. We were able to cover their shifts using our wonderful new private hire, Lisa, and Misty from HCA.

Peggy has had some concerns about Misty's caregiving. I have talked at length with Peggy about this issue. I want to be clear, that while I am sympathetic to Peggy's anxiety, I strongly believe that Misty is a capable and caring caregiver.

Peggy handled the matter by writing a very direct letter to Misty that was not received well and to make a long story short, Misty will not be coming back. This leaves us with no coverage for 14 overnight shifts between next week Wednesday and the middle of October.

I have spent the day working on finding anyone that can cover the overnight shifts. I have posted an ad on Craigslist, called around to other agencies and a few potential private hires. In order to get someone in by next Wednesday I need to begin training immediately, so hopefully I will get some call backs in the next day or so.

Please let me know if you know of anyone who might be interested in taking some overnight shifts. Ideally, we're looking for someone with nursing and ventilator experience. Please send good energy our way - we need it.

Important: As I have already let Peggy know, from now on, any of Peggy's concerns regarding caregivers must be channeled through me. Any letters that Peggy dictates that are directed to a caregiver (volunteer, private hire, or agency nurse) MUST be given to me first.

I have spoken with Peggy today about all of this. If you have any questions about this issue or any other, please don't hesitate to come and talk with me.

Monday Update

Well, it is almost 8pm and I'm still here at Peggy's. Been here working all day, but then Jen, Jason, and the girls said they were gonna bring by pizza so we're all here now hanging out. Peggy got up in the wheelchair and directed Karen, Marvel, and myself in the kitchen. She had us make these delicious stuffed mushrooms and then an angel food cake with strawberries and whip cream. Yum. The kids loved the dessert.

Emma brought her new puppy, "Cooper", with her tonight. To say that this 5 week old puppy is adorable is an understatement! It looks like a tiny little bear. We have all been taking turns snuggling her. As I'm sitting here, I can hear everyone talking, Marvel spelling, all the kids - Indy, Sawyer, Jade, and Cian screaming and giggling...Opera music is blasting from Peggy's room...classic Chun chaos.

Today Cathy had to come by this morning to check the cuff. Peggy's lips were fluttering and the balloon felt soft. She checked it and Peggy had lost 2-1/2 CCs since Friday. When she was here Friday she had lost 1 CC. We're not sure what is going on, but it is sometimes affecting her sleep. Marvel had to call HCA again tonight.

We know that some air leakage is normal and since her O2 levels and everything are not affected, this is not an emergent issue. However, she is fairly uncomfortable and if her sleep is affected then we need to address this issue. Hopefully we'll have more info and ideas soon.

The Hawaii Woman Expo this past weekend was great. We have seen a lot of interest in The Watercolor Cat and people LOVED seeing Peggy on Saturday at the show. The Na Leo Lani choir sang for her and lots of fans came up to talk with her and tell her what an inspiration she is. It was a mellow show - not as profitable as Made in Hawaii, but it was such a pleasant show to do - such great energy and a lot of fun. Big thanks to Karen, Ania, Kelly, Margaret, Bobbie, Shelly, Marvel, and Elroy for helping us with the show and thanks to all of you who visited our booth!

OK, I'm off...I can hear Eric doing "magic" for the kids in the living room! They are currently chanting "more magic, more magic"! Too cute. I'm not going to be around the house tomorrow - I have to wait at the house all day for Hawaiian Telcom to come set up our service (we are switching back from Oceanic Digital Phone service which we weren't thrilled with). Then the kids have their swim lessons!

HPU Documentary TV Debut

For you local Legs, please mark your calendars and set your Tivo for Saturday, September 22nd at 5:30pm. The HPU Documentary "Peggy with Love" will be airing on KHNL (that's channel 8 on digital cable). They will be showing the documentary and then a roundtable discussion moderated by Howard Dashefsky. The roundtable participants are HPU film instructor Jacque Langley, Cory Lee from Healthcare Alternatives, a Hospice nurse, and myself!

The video won an International Award. For more about the documentary and the award it won, read the article below:

HPU Student Video on Artist Peggy Chun Wins International Award

The Hawai‘i Pacific University student-produced video, “Peggy With Love,” has received national recognition.

Jacqueline Langley, HPU assistant professor of communication, and Mark Nitta, HPU Communication Video Lab manager, along with a team of Hawai‘i Pacific students, have won a “Gold” Aurora Award. This prestigious award, judged by industry professionals, recognizes individuals in the film and video industries in the United States and abroad who have achieved the ability to captivate their audiences with the displays produced from their own creative forces.

“Peggy With Love” is a love letter from the famed Hawai‘i watercolor artist Peggy Chun, who is fully paralyzed by amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s Disease, to herself. The video explores Chun’s journey toward death. In the documentary, Chun converses with world-renowned death and dying expert Dr. N. Michael Murphy, who founded a pioneering hospice in Albany, New York. It is a powerful documentation of Chun confronting death, herself, her life, and those she loves.

“Peggy Chun is our teacher because her message is universal – someday we must all confront our deaths,” said Langley.

Hawai‘i Pacific University’s Advanced Video Production has been recognized numerous times in recent years, including the 2006 Association of Partners for Public Lands (APPL) Media & Partnership Award and the 2005 International Communicator Crystal Award for “First Shot: The Secret Submarine Attack on Pearl Harbor.” The video premiered at the USS Arizona Memorial and was broadcast on KFVE-TV, Dec. 7, 2005, the anniversary of the attack on Pearl Harbor.

Other HPU Advanced Video Production award-winning videos include “50 Years of Rebuilding Lives Together” for the Rehabilitation Hospital of the Pacific, “‘Ohana” for Child and Family Services, and “Kaho‘olawe: Ka Ha o ko makou mau Kupuna (The Breath of our Ancestors),” which won the 2002 Hawai‘i International Film Festival (HIFF) Blockbuster Audience Award for Best Short Film.

Peg's Eyes and Cola News

Peggy's been doing great with her new trach, however her eyes have been really red and irritated today. It has been extremely difficult to read her eyes most of the day. She has been going through PM Gel like crazy - Elroy (the PM Gel Distributer of the House) says it has been one tube a day. Yikes. Her eyes have been irritated on and off for the past few days. It is so weird - one minute they will be so red and the next they will look much clearer.

We have some news about Cola. Blue Cross has informed us that she has Feline Leukemia. Her fever is down, but she is still not eating much. However, they said she can come home today so Elroy will be picking her up this afternoon.

Feline Leukemia can be very serious, so we are planning to take her and Jack for a check up at Carole Fujioka's Cat Clinic, hopefully this weekend. Cats can infect other cats, so we need to make sure Jack gets checked out. We are going to "wait to worry" and start first by finding out more information about Cola's illness.

Peggy's Got a New Trach!

Peggy got her new trach at Queen's yesterday. She requested to be put out for the surgery which was a great idea - much less traumatic than usual. She got home by late afternoon and got to spend a bit of time enjoying the evening Nuuanu breeze. I got word that the doc put in 16-1/2 ccs of air, but I will find out more about that.

Cola the cat is still at the vet. The vet told me that she had a high fever so she's now on antibiotics. They are running some labs and so we'll find out more today. I'm supposed to check in at 11.

More Watercolor Cat Info

There was some confusion at the Mutual offices yesterday and some misinformation given out, however things should be all cleared up now. Books will be available to Peg’s Legs October 1 through Mutual. They will be available shortly after at Borders and many other bookstores. If Peg’s Legs purchase through Mutual, they will donate $5 per book to Peggy’s care! We are so grateful for Mutual’s kind and generous offer. To be clear, for this situation, a “Peg’s Leg” is defined as anyone who has ever been a part of Peggy’s care system in some form. If you need more info on this, just email me.

Some of you had asked how many books come in a case and the answer is “30”. Some of you also were wondering more about the contents of the book, so here is a longer description:

Local artist Peggy Chun, known for her whimsical paintings of snorkeling cows, dancing pigs with tropical plants and scenery, shares her work and personal story through the eyes of her beloved and mischievous cat Boo.

Written for the young at heart, it tells the simple story of a painter who continues to find strength in her art through her battle with ALS. Her artwork is featured and shown in progression --from her early days as a struggling artist to the first stages of her illness when she loses the use of her right hand, through to her current state of almost complete paralysis. With the help of a computer she is able to paint with her eyes. Yet, despite the draining physical and mental challenges, Peggy continues to paint and finds solace in the act of painting and creating the beautiful scenes- both comical and poignant -- inspired by her Hawai'i island home.

For you local folks, we will be promoting the book this coming weekend, Saturday September 8th and Sunday, the 9th at the Hawaii Woman Expo at the Blaisdell. We will have a booth in the gallery section of the show, right across from Mutual Publishing’s booth. Peggy and Shelly will be at the show Saturday around 1:30pm. The show is from 10am to 6pm both days.

Trach Change TODAY!

Change of plans AGAIN...Peggy will be going in today after all! It will be same day surgery. We'll report more soon.

Trach Change Rescheduled

Peggy's trach change has been rescheduled. She will NOT be going today to get it done. We think it will be next week. We'll let everyone know when it is confirmed.

The Watercolor Cat Special for Peg's Legs!

Click on the image to see it bigger...

Cola Update, Trach Change, HCA Trainees

We're still waiting for news on Cola. I called this morning, but the doc did not have a chance to treat her yet. He said that she is probably going to have to stay overnight again. Jack and Bug don't seem the least bit concerned that she is gone. Men.

No doctor visit today or next week since Dr. Davis is out of town. However, Denise called and told me that she wants to schedule a trach change since they have had to put air in the cuff all weekend. She is trying to get it scheduled for tomorrow, but we're still waiting to hear back from her. She is trying to do it as same-day surgery so that Peggy doesn't have to stay overnight.

We have a couple of new people from HCA training/observing. Alverna is here now and another gal (I think her name is Kelly) is coming at 2:30 to be trained by Cathy.

New Blog Feature

FYI - you can now email me directly from the blog - see the link below my Meez.

Long Weekend and Cola Update

Eric, myself, and the kids have had a long and wonderful weekend. We went to a beautiful wedding on Saturday on the North Shore. Sunday we spent the day at the kalo farm and then drove back out to meet some friends on the North Shore and spent the night out at a Turtle Bay condo they had rented. We spent all labor day on the North Shore, swimming at Waimea and then canoe sailing at Kawela Bay. It couldn't have been a more perfect long weekend.

Today, Indy goes back to school and also starts swim lessons again. Also starting swim lessons today - Sawyer! He and I will be taking the parent-aide class at the same time as Indy!

While I haven't been around the house this past weekend, I got a call yesterday that Cola the cat was sick. Misty and Peggy told me that Cola was laying under the bed and kind of hanging her tongue out. Since we were on the North Shore, I called Elroy and asked him to take her to Blue Cross Animal Hospital. It was closed because of the holiday, but Elroy was able to speak to a doctor there who agreed to watch her overnight and treat her today. So we are supposed to call this morning when then open to check on her. We'll of course keep you all posted.

Elroy was also kind enough to pick up Maka from our house (we couldn't take him with us). So Maka had a nice day with his "gung gung" and got to sleep over at the house last night.

OK, I'm off to start catching up from our long weekend...gotta get things done while the kids (and Eric!) are still sleeping...