Wednesday, April 30, 2008

Respiratory Training

I have set up a ventilator training session at Respiratory Home Care for Leah on Monday, May 5th at 5pm. If anyone else is interested in brushing up on their vent skills, let me know and we can arrange for you to attend. The class is a Respiratory Home Care in Kalihi and usually lasts until 6:30 or so.

Doc Visit and a Few Other Things

Peggy had her doc visit yesterday afternoon. Pretty much the same as last week. Nothing new. Peggy has asked that her doc visits be cut down to once every other week. They will get back to us on this. Catherine did suggest that Peggy increase her oxydose to manage her pain better (Peggy is still reporting pain around the trach stoma) since the amount of oxydose doesn't seem to cause or increase hallucinations. Caregivers should now ask Peggy how much she wants each time (every 4 hours).

I had our new pharmacy, Pacific Health Inc. (PHI) deliver some Refresh PM. This time we got the generic which is exactly the same but much cheaper ($6.25 per tube). The generic is called "Lubrifresh PM".

A few other notes...yesterday, Rhea and I worked on taking photos of the available Peggy Chun originals - you can see them on our shutterfly account (see link to the left).

And some save the dates - we have decided to do another Art & yard sale on the weekend of June 21/22. So start your spring cleaning! We'll be accepting donations in June, we'll let you know when you can start bringing stuff over (PLEASE NOT YET!!! Ha!)

And Peggy's birthday is coming up next month on June 4th! That is a Wednesday and we are still trying to figure out how exactly we're going to celebrate...any fun and fabulous ideas???

Elroy Update

My mom and I went to visit Elroy today. He seems OK, just a bit out of it. They are giving him fluids and waiting to get results back from an ultrasound. Currently, they suspect that his prostate is enlarged and therefore caused a blockage that caused kidney failure and possibly a kidney infection. We will know more soon hopefully.

Elroy is very restless and anxious to go home, but is also seems lethargic and not his normal feisty self. He's bored for sure and doesn't like being trapped there! We had a good chuckle when we were talking to the nurse. We were asking to be a part of any discharge planning and the nurse said, "Oh, but Mr. Chun tells us that there is already care in place at his home" - and my mom and I said, "Um, yeah, BUT NOT FOR HIM!" That rascal is trying everything to get an early discharge! Ha!

Tuesday, April 29, 2008

Elroy at Queen's Hospital

Elroy was admitted to Queen's Hospital today. As many of you have noticed, he has not been looking or feeling well the past few days. Turns out he had a bladder blockage. They have found that he has kidney damage, which they are now investigating and running tests on. They want to monitor him for at least a couple days. We will know more tomorrow when some test results come back and of course we will keep everyone posted as we find out more. Eric was with Elroy at Queen's today, getting the full scoop directly from the doctor.

Thank you to all of you who have been keeping an eye on Elroy lately and looking out for him. We're so relieved that he is in good hands now and that he is getting the medical attention that he needs. It is also great that he will be forced to rest!

Monday, April 28, 2008

Dolphins Rule!

Peggy is getting reiki right now. And I'm cramming out as much work as I can while Eric has Sawyer. They are running around doing "boy things" and enjoying some father-son bonding time.

Peggy's brother Matt and Marlene are here, spending some time with Peggy before they leave tomorrow to head back to Washington. We had a nice dinner here on Saturday night with everyone. We had fun watching videos - we watched Peggy and Elroy's wedding video (when they got married the second time by Elvis in Vegas!) and some other home made Chun videos.

On Sunday, we got to do the coolest thing. Thanks to the amazing Hanna, who now works at Dolphin Quest, we were lucky enough to participate in a "dolphin experience" at The Kahala Hotel. Me, Indiana, Jen and Jade Segler, and Hanna got to pet, swim, and interact with our new 400 pound best friend, "Kolohe". It was the most magical, fun experience and we will cherish the memories forever! You can see photos of our special day here on our Shutterfly website.

We shared all the photos with Peggy today and even some video clips that we took. She loved it of course!

Wednesday, April 23, 2008

Doc Visit Report

Peggy had her doc visit yesterday afternoon. Here is what they covered:

Peggy says that she is still having pain inside and around the trach stoma. She says that the pain now seems to be spreading to her upper/center chest, but that the source of the pain is the trach. She says on a scale of 1 to 10, the pain is a 7, but the pain is not constant. She says she feels it about 5x a day.

Peggy said that on 4/21 she felt a rash on the right side of the face but now says that it is probably from her face being scrubbed during bath and that it is not bothering her anymore.

As far as Peggy's hallucinations go, they have increased again. She says that she's now having them 25x a week and that they average an hour. They occur mostly during the afternoons and evenings. They still scare her and make her feel out of control. She says that on 4/21 at night, she had one that lasted five hours.

Dr. Davis said that he will be contacting the ALS Association to see if there is any correlation between hallucinations and ALS.

We have Leah training again today. Karen has her granddaughter Alayna here today (she's 5) and so Sawyer has a playmate!

Tuesday, April 22, 2008

Happy Earth Day!

We're back from our long weekend of FUN! We had a blast at the Kokua Festival - see the photos here. I especially like the one of Sawyer playing his kazoo. We went with Rhea and her husband KC and ran into Hanna there too! Speaking of Hanna - tomorrow is her birthday! Happy Birthday, Hanna!

The kids had so much fun at the concert. We ended up making a weekend of it. We stayed in Waikiki and spent the weekend at the beach, the zoo, and the aquarium! Needless to say, we are tired and a little dehydrated from all the sun, but it was worth it! These are the memories that our little monkeys will have forever.

Today, Peggy's brother Matt and his wife Marlene arrived in town. They are going to be here for a week. We actually don't think that Peggy knows they are coming, so it is going to be a surprise when they walk in soon!

I'm here just trying to catch up on work now. May is a big month for us with lots going on. We have our big Mother's Day show at the Blaisdell, then the Hawaii Book & Music Festival, an event at Barnes and Noble for the Father Damien mosaic, and more! Plus, we are also working on our next fundraiser for Peggy - a keiki fun day at the end of the month that we are doing in combination with Peggy's birthday. We'll have more info on all of this as we flesh it all out. Please let us know if you are interested in helping plan or help out with Peggy's birthday fundraiser/keiki fun day.

Last, but certainly not least, today is Earth Day! So have an organic, locally grown dinner, plant a tree, walk somewhere, and take the time to celebrate our beautiful planet. We CAN make a difference - make today the day you commit to making positive changes in your life that benefit the earth and future generations.

And here's one easy thing you can do right now - switch your internet search engine from Google to - that's google's more energy conscious search engine. Here's more info:

In January 2007 a blog post titled Black Google Would Save 750 Megawatt-hours a Year proposed the theory that a black version of the Google search engine would save a fair bit of energy due to the popularity of the search engine. Since then there has been skepticism about the significance of the energy savings that can be achieved and the cost in terms of readability of black web pages.

We believe that there is value in the concept because even if the energy savings are small, they all add up. Secondly we feel that seeing Blackle every time we load our web browser reminds us that we need to keep taking small steps to save energy.
How can you help?

We encourage you to set Blackle as your home page. This way every time you load your Internet browser you will save a little bit of energy. Remember every bit counts! You will also be reminded about the need to save energy each time you see the Blackle page load.

Help us spread the word about Blackle by telling your friends and family to set it as their home page."

Happy Earth Day, Everyone!

Magda & Recky's Song for Peggy Online!

Magda sent us an email to let us know that her and Recky's song, "You Can Move Mountains with Love" is now on her myspace page. Magda wrote this song for Peggy while she worked on the Father Damien mosaic with her.

Magda's MySpace Page

MDA ALS Seminar - May 3rd

Mark your calendars for the MDA ALS Seminar

Date: Saturday, May 3, 2008
Time: 9:00 a.m. - 12:00 p.m.
Place: Queen’s Conference Center
Cost: Free

An open seminar where we will share the local resources available for families in Hawaii living with Amyotrophic Lateral Sclerosis (ALS is also known as Lou Gehrig’s Disease). Seminar highlights:

• Ho'okele Personal Health Planners President Bonnie Castonguay will give a presentation on "The challenges of caregiving and how health navigation can support and help caregivers."
• Harvard University Stem Cell Institute research scientist Dr. Justin Ichida will give updates on "Patient-specific stem cells for regenerative medicine and disease modeling."
• Other speakers include MDA clinic co-director Physiatrist Jayson Takata and MDA health care services coordinator
• Demonstrations from medical vendors, equipment providers and therapists

MDA is the world leader among voluntary agencies in fighting ALS, offering the most comprehensive range of services. People with ALS receive care at 38 MDA/ALS centers or at any of the 225 MDA outpatient clinics across the country. MDA also leads the search for a treatment or cure for ALS through its aggressive, worldwide research program. To register or for information, call MDA phone 808-593-4454.

Friday, April 18, 2008

Puppy Love

WE ARE IN LOVE...with Lisa's new puppy!!! Her name is Chloe and she is a chihuahua-terrier mix. She's the tiniest, cutest thing you've ever seen and we have been having a blast with her! She loves to sleep on Peggy during Lisa's shifts and slip and slide on the wood floors chasing balls that Sawyer throws to her. Check out the photos of her below.

The great news is that Indy did not have hand-foot-mouth! Hooray! It was just a cold sore. Such a relief since we have big plans this weekend. We have a birthday party for her friend this afternoon and then tomorrow we are going to the Kokua Festival at the Shell. Have a great weekend everyone!!!

Wednesday, April 16, 2008

Wednesday Update

I have both Sawyer and Indy here at Peggy's today. I dropped Indy off at school, but then got a call that she has a mouth blister. They have 5 kids out with hand-foot-mouth virus and so they wanted me to pick her up and take her to the doctor to have them check it out.

Both she and Sawyer have had it before. Most adults have already had it and built up an immunity to it. Indy doesn't seem to have any other symptoms - in fact, I can hear her and Sawyer squealing with delight in the living room as I write. They are riding bikes around the living room and don't seem the least bit ill, so that's good.

Peggy is very tired today. Apparently she didn't get much sleep last night because her eye was really bothering her and she had to be yankaured quite a bit. So Peggy has been napping this morning.

We have a new private hire training from 2 to 6pm today. Her name is Leah. She will also be training on Friday from 2 to 6. Yay!

Monday, April 14, 2008

Aloha Auntie Nona

As many of you know, we have been talking a lot over the past few days about the passing of Peggy's dear friend, Nona Beamer. Nona passed away peacefully on Thursday, April 10th. There are many wonderful articles about her on the Honolulu Advertiser website, and we urge you to go to the site and search for "Nona Beamer" to learn more about this remarkable woman and the many lives she touched. There is also a lovely blog post by her son Keola Beamer on his website at

Peggy and all of us will miss Auntie Nona and we think fondly of the wonderful memories we have of such a special woman. Please come by and share your own memories and stories of Nona with Peggy - she would love to hear them. The same day that Peggy found out about her passing, we found a letter that Nona had written Peggy just 2 weeks ago. It was a note congratulating Peggy about the Father Damien and telling Peggy that she was proud of her. Inside of the note was a little piece of cardboard with "good for 1 hug" written in pencil in Nona's handwriting. What a special treasure to remember her by. We love you, Auntie Nona...

Happy Monday!

Here we are...Monday already?! It's been a pretty quiet day around here. Sawyer took a nice long nap at the foot of Peggy's bed...

This afternoon, Peggy got a reiki treatment from a friend of Magda's named Dawn. Reiki is a type of energy healing. And then, Dawn did some reiki on Marvel, who has a sore back today. Thank you, Dawn!

Peggy's ear doc appointment went well on Friday. There was one stint still intact, so he just replaced the one that had fallen out. So Peggy can hear on both sides again.

Peggy's dentist came by on Sunday to look at her teeth. He said that there really isn't much they can do about the one tooth that is currently laying almost flat, short of pulling it out. However, he's not sure if that would help or just "open up a can of worms" since it seems to sort of be bracing the other teeth. If he were to pull that one out, it might just mean that the others would collapse into the new space.

Peggy's going to email him more detailed information on her mouth pain and he says that he will come back in a month to see her.

Wednesday, April 9, 2008

Getting Stuff Done!

Just wanted to let everyone know what Peggy has her ear doc appointment scheduled for this coming Friday afternoon.

I also emailed Dr. Cassella, Peggy's dentist, to let him know about the aching in Peggy's teeth.

I was also able to schedule a visit with Clarence Liu, Peggy's spiritual counselor. It has been a long time since we've had the pleasure of Clarence's presence - he will be coming to talk with Peggy in a couple weeks and hopefully we will be able to schedule him on a more regular basis again.

Spiritual counseling is offered as part of Peggy's HMSA palliative care benefit and when I asked her about it, she liked the idea of utilizing this benefit and seeing Clarence again.

Tuesday, April 8, 2008

Tuesday Doc Visit Report

Peg had her doc visit today (with Dr. D all the way in Seattle at a conference!). Here is the report:

Trach - Peggy said that she has been having constant pain in the trach and on the outside around the trach. When she is inline suctioned, it adds a little pain. Dr. Davis is aware of this issue, but didn't have any solution right now.

UT issues - Peggy says that she has no more burning sensation. So we're assuming that that antibiotics did their job.

Skin rash - Peggy has a rash on both her arms and she says that it does hurt (a "5" on a scale of 1 to 10). She is worried that it is spreading to her shoulders and back. Dr. Davis said that this could be a reaction to the antibiotic. He has recommended that we continue to use Lotrimin on it and he has also ordered another ointment that Catherine will pick up for us.

Speaking of Catherine, who helped us with the doc visit today - did you know that she is pregnant...with twins! She is only a few months pregnant, so she doesn't know if it is girls or boys. So exciting!

Back to the visit...

Hallucinations - Peggy says that has had only 2 hallucinations this week and that they occur usually after 3pm. They made her feel out of control and they seem very real. Obviously, her hallucinations are quite reduced - she only had 2 all week compared to the 4 to 5 she was having per day. Rhea had heard in a seminar that hallucinations can be caused by UTIs and so we're thinking now that the UTI she had was causing (or at least worsening) the hallucinations. Interesting.

Peggy says that her mood this week has been "good".

We've had a full house here today. We have a new B volunteer on Tuesday mornings - her name is Dana and she is an old friend of Peggy's from the SS Independence. She worked on the cruise ship when Peggy taught art on board. She has great stories of Peggy and the Beamers! They were a wild bunch on that ship!

We're missing Hanna today, but we love getting to hang with Miss Lisa. And we have Karen and Rhea here too. We also had a promising interview today with a potential private hire. We'll keep you posted!

Monday, April 7, 2008

Monday Monday

Getting lots done today now that Sawyer is feeling better (he's been sick and teething for the past couple weeks). It was a busy weekend for Peggy. On Saturday night she had Kosuke over since he is going to be heading back to Japan. Kosuke is the young Japanese man from Tenrikyo Temple that has been coming to chant/pray over Peggy for many years now. We are very sad to see him go.

On Sunday, Peggy had the Seglers over to celebrate Jason's birthday (which was on Saturday). Eric and Sawyer joined the pizza party as well. Indy and I were not able to attend since we had a tea party at my Aunty Pat's. My aunties have a tea party every year right before my grandma (my dad's mom) returns to Wisconsin (she stays with my mom and dad during the cold months!).

Magda's friend is coming by this afternoon to give Peggy a reiki treatment...Peg's eyes are pretty good today. Lisa's been spelling a bit, but mostly it's a mellow day around here.

Friday, April 4, 2008

Doc Visit Report

Here is the doc visit report from Wednesday night:

Dr. D did an eye exam. He reported that Peg's eyes seem to move to the left slower than to the right. Remember to give Peggy Refresh PM often and that we can give the Tobradex when her eye are red and irritated.

Dr. D gave us the go ahead to make an ear doc appt. to get the stints put back in Peg's ears.

Peggy reported that her teeth have been hurting. She has asked me to contact her dentist to come by, which I will do. She says her teeth have been achy since last Tuesday.

Peggy reported that her trach has been hurting on the outside and that there has been some bleeding at the trach site.

Peggy reported that her UTI issues seem to have gone away. She no longer has any burning sensation and so we are considering this issue resolved and are done with antibiotics. We will continue to give cran juice.

No rashes, skin breakdowns, or problems with toes/nails to report! Yay!

Regarding Peggy's hallucinations...Peggy has reported that her hallucinations have been increasing and that she thinks it could be her meds, but is not sure. However, her oxydose doses have not changed, if anything they have decreased. She is getting 10mg every 4-6 hours.

Peggy says she is having these hallucinations at least 4x a day and they are now lasting longer. Peggy says that they do frighten her and that she feels now like she "can't get out of them". She says that they now involve "moving objects".

Dr. D suggested that Peggy decrease the frequency of her oxydose to closer to every 6 hours. He says that if hallucinations occur within the hour, it is probably due to the oxydose. The only way we will determine this is if we ask Peggy on a regular basis if she is having hallucinations for the hour after you give her the meds. Please let me know what you find out.

Peggy says that her mood this week has been "good" (Dr. Davis asks Peggy to report on her mood every week).

Peggy's chest sounded rattly on 2 sides during the visit. More on the right side.

Dr. Davis is going out of town, but he still may do a video visit next week - from Seattle!

Wednesday, April 2, 2008

Happy Birthday Marvel!

Yesterday's party for Karen was lovely. We grinded ono Korean food (Kalbi for Karen and Tofu Katsu for me and Rhea!). It was also a chance to have one last meal with Magda before she was off to head back to Poland. She was busy as ever packing everything up yesterday and clearing out of the cottage. And - guess what - tomorrow is her birthday! 3 amazing birthday girls in a row! Wow!

Nurse Cathy came by yesterday to check on Peggy. As I mentioned, Peggy was taking a 3-day antibiotic for the bacteria found in her UTI test. Cathy checked with Peggy to see if it helped and Peggy's reply was "a bit". The test had revealed some staph, so the step will be to more aggressively treat it with another type of antibiotic.

Yesterday was also Hanna's last Tuesday shift. She has gotten a job with "Dolphin Quest" and so will only be working Saturdays with us. We're very happy for Hanna and her new dolphin friends, but we'll miss her on Tuesdays.

Lisa has graciously agreed to take on these Tuesday morning shifts for a while. There have been other changes in the schedule lately...Lolo has cut back her hours, so Lisa has taken over her Thursdays and Marvel has taken over Lisa's Thursday morning and some of Lolo's Fridays so that she can make it to signing rehearsal...phew! The scheduling is quite mindboggling! I've said it before and I'll say it again - Thank Heavens for Suzanne Maurer!

Anyways, with all the changes, we are in the process of finding another private hire to help spread out the workload a bit and give us another back up person to call. As always, if anyone has any lead, please let us know!

We had Marvel's birthday party today. We've been eating cake and having good fun. We had a special surprise visitor today - former private hire, Jess Smith, and her 2 year old daughter, Reef. Kelly came by today with Pepper too, so it has been a fun kid day around here. Sawyer's been a little under the weather, but having Reef and Pepper around has made him feel better!

We have a doc visit for Peggy this afternoon, so this morning, Pat, Pokey, and I worked on her doc visit form. I will post the report from the visit soon. I personally spent a lot of time spelling with Peggy today and I will say that I find it extremely difficult to spell. I can get a good yes or no, and once in a while I can get on a roll with the letter spelling, so long as I ask a few primary yes or no questions to find out what I'm talking about. I can see that her left to right movement is much more detectable than up and down.

That's it for now. Above are some photos of all the fun. And no, our kids aren't really drinking beers...those are unopened beers we gave to Marvel for AFTER her shift! You'll also see the stools that Kelly redid for us - they were ugly green and so she spray painted them black and then staple gunned the leopard print material on! So crafty!

Tuesday, April 1, 2008

Lolo's on YouTube!!!

No, she wasn't caught on camera doing something embarrassing (though that's probably inevitable sooner or later). Actually, a video has been posted on YouTube of a small group (about 12) that she has been a part of, singing a composition by Sean Tiwanak. He wrote this in honor of Mother Marianne. Enjoy!

Lolo on YouTube