Toe Appointment Changed

Dr. Morris's office called and said that they just realized that June 11 is a holiday so we had to move it to the following Monday which is June 18th - same time 3:30, pick up at 2:45

Cats, Toe Appointment, Humidifier

Today I put flea medicine on all 3 cats. Cola and Jack got new sassy collars with bells (they are safety collars - they break away easily if they get caught on anything so they won't get strangled). I want to clean Peggy's room really good and vacuum/clean up any fleas/ants, but I need to wait until she's up in the chair one of these days.

I finally made her toe doc appointment. They can take her Monday afternoons so I set it for Monday June 11 at 3:30pm. I figured she wouldn't want to go to the podiatrist next Monday on her birthday! Cab will be coming to pick her up at 2:45pm. His office is in POB 2.

I bought a humidifier at Walmart today since Eric is planning to fix the AC tomorrow. The eye doc said that she shouldn't have the AC without a humidifier.

Eye Update and Rash...

Yesterday updates from Ms. Lolo:

Ty came by tonight and brought some medication for Peggy's eyes. She wrote up a regime which I posted behind Peggy. I also wrote it on the log and informed Helena to pass it on to the next shift. I'm going to send it to you as well, so hopefully the info will get disseminated to everybody.

The 'bubble' eye patches are on order and Ty will bring them by when she gets them. She wants Peggy to try the Restasis and a new med called Lotemax (does not need to be refrigerated), that is supposed to replace the Tobradex eventually. Ty explained that Peggy needs to be weaned off the Tobradex because it is a steroid. The Lotemax is also a steroid, but not as strong. I put the boxes of Restasis in the office fridge. Here are Ty's instructions:

Week One: Twice a day at 9am and 9pm

a) Use Refresh Tears to flush eyes
b) 9:00am 1 drop of Lotemax
c) 9:15am 1 drop of Restasis

Repeat process again at 9pm

Peggy can stop the Restatis if the burning/stinging is bad. Try to only use Tobradex ointment once a day at most. Then use the cold Restatsis 2x/day if burning/stinging is ok. Continue to use the Refresh Tears as much as needed. NO FAN ON FACE EVER!

Peggy has a rash on the front of her upper thighs. Katherine came by today and said that we can use Desoximentasone cream 2xdaily by rubbing it on the rash.

No Trach Change After All

Peggy had her doc visit today. So here's the scoop. Peggy has opted NOT to get her trach changed so long as HCA comes by to put air in. There is a very slow leak - only about 1.5 CCs over a 3 or 4 day period. Dr. Davis and Dr. Druger are very happy that she has decided not to change her trach since there is truly no medical neccessity for it and the risks outweigh any possible benefit. HCA (Cathy or Catherine) will coming by Tuesdays and Fridays to check the cuff and add air. NO ONE ELSE IS SUPPOSED TO TOUCH THE CUFF. Period.

Peggy's toe is of course still funky. Now that we know she is not going in for a trach change, we can schedule the podiatrist. I will work on that tomorrow.

Peggy was complaining of congestion and thought that maybe the suction machine wasn't working right. They delivered a new suction machine and Peggy says it is working better. She said that last night they got a lot of mucus out and that made her feel better...and that was even before the new suction machine...so I think this has probably worked itself out on its own.

It's been lots of fun around here for Peggy with both kids here. Peggy has begun sorting through costumes for the big party and Indy had fun getting into the mess yesterday - check out her funky bunny get up!

Eye Update, Visits & Party Planning, Caregiver Fuel

Yesterday Ty's eye doc friend came by to look at Peggy's eyes - here is the report from Lolo:

Dr. Tim McDevitt came by this evening to look at Peggy's eyes. He is suggesting putting her back on Restasis. She complained it stings and burns. He said that if it is refrigerated it takes the sting away. He also said that the fan needs to be well away from her eyes and that the A/C (if/when it gets up and running again) will dry out her eyes. He suggests getting a humidifier for the room. He also suggests not only covering her eye (one at a time) but taping the covered eye shut to avoid any damage to the cornea. He checked her corneas and said they were in pretty good condition. He said that using the PM gel in conjunction with the Restasis is fine, but the Restasis should only be used several times a day. He will be talking with Ty over the weekend to come up with a new protocol for her eyes and then let the caregivers know what to do.

There is a 'bubble' type eye patch that he suggested using on Peggy's eyes. He said Ty knows more about the different types of eye gear and that they will decide what's best to use. If they can manage her dry eyes, there is a possibility she can get back on Erica at some point. He kept reiterating how dangerous it is to use the Tobradex as much as Peggy has been requesting it. Peggy said that she would be willing to use the Restasis if it helps her get back on Erica.

Peggy had a nice visit yesterday with Michael Powell and Hiroshi Tagami who came for a visit with Donna Sullivan. She got massaged and read to...she was in heaven.

Today we had our party planning meeting - this is going to be a FABULOUS party! So fun!

Lastly - We have restocked the "caregiver fuel", so please DIG IN!!! We want to keep you guys well fed, well sugared, and well caffeinated! By the way - hope you all have been using the leg massager in the room! Give it a try :)

Doc Visit Update and Holy Trinity Kids Visit

Peggy had her doctor visit yesterday. Here's what Dr. Davis had to say:

Regarding the trach discomfort - he suggested rolling a small washcloth and placing it under the trach to brace/prop it. We'll be scheduling her trach change soon.

As for the reflux issue - he said that whenever Peggy complains of the reflux, take her off the tube feeding and sit her up. He said that we can acutally take OUT about 40 ccs of liquid from her g-tube using the syringe and then administer the normal dose of mylanta.

Regarding Peggy's leg cramps - he said that we can put pillows under her knees and thighs OR put her in a "frog leg" position to alleviate some of the pressure.

Peggy's eyes were tired yesterday, but pretty good. The kids from Holy Trinity came with Shelly and got to meet Peggy, fish in the awai, have a pizza lunch, etc. They all sang 2 songs for Peggy as a surprise (see photo above). It was so sweet.

I'm out of the office this morning since my car is in the shop for a "creaking" issue. I should be getting it back in time to pick up Elroy and take him to the airport this afternoon - he has a meeting over in Kauai and so will be gone for a couple days. What a jet-setter.

We are having our first party planning meeting tomorrow around 12:15. Please join us if you want to help! I have to pick up Indy first since she only has a half day. Then she is out of school until June 4 - so you guys will be seeing a lot of her next week. I'm trying to get as much done today and tomorrow morning as I can!

Peg's Legs Update: SAVE THE DATE

This Peg's Legs update went out today:

Aloha Peg's Legs,

It is that time of year again - Peggy's birthday is coming up on June 4th. Peggy's request for this year...to have one of her famous "Women's Parties"! In a moment of weakness we said "Sure Peggy!" :)

If you have ever been to one of these parties, you know that they are not only for women, however any men that are man enough to attend MUST come in drag. There is always a theme and this party's theme is "Peggy's Enchanted Forest".

So mark your calendars for Saturday June 16th! We have not yet solidified the time, but we're shooting for 4pm until the cows come home. There will be more emails to come as we plan in more detail.

We are looking for people to help with the party. Please email me if you would like to sign up for any of the following:

Party Planning Committee
Decorating Committee
Peggy's Costume Creation Team
Set up Crew (Friday and/or Sat)
Clean up Crew (Sat and/or Sun)

We would like to have our first party planning meeting this week ASAP (since we only have a few short weeks until party time!) so if you are interested in helping with the planning, please let me know your availability for a meeting this week.

So come and join the fun and help us give Peggy a fabulous birthday celebration! And let us know if you have any other party ideas or ways you would like to contribute...

Kimi

I'm Baaaaack

OK, I'm back in the office and back to my responsibilities! Eric and I had so much fun over our long weekend. Since Friday when we went to the Moana for a night, we've been surfing, canoe surfing, hanging out with my girlfriends, hanging out with Damon, we went to birthday party at the zoo, took Indy to see Shrek the Third, had family dinner with my aunt's house, had family dinner here at Peggy's last night - phew! We're exhausted, but oh so satisfied. We squeezed enough fun in the past 4 days to last us a while!

Now, for the Peggy update...Peg's eyes are doing much better. They are clear today, but a little slow since she said that they are burning. Ty was here last night and stressed to us again how important it is for us not to overuse the TobraDex - 4 times a day max. Ty doesn't seem to think there is an allergic reaction going on. She really feels that Peggy needs to tape one eye at a time to give each eye some time to rest. Peggy is wearing her goggles today, which is also a great idea for keeping them sheilded from external irritants. Please also be sure to wash your hands regularly and be very careful when blinking Peggy.

I spoke with Denise today and she told me that Dr. Druger is very against the idea of going with the longer trach. He says that Peggy's neck is not long enough for this type of trach and it would result in the trach reaching down only to one brochial side - meaning that we would only be able to suction on one side, making her very prone to mucus plugs, pneumonia, etc. Obviously, we are not going to go with the longer trach. He will replace the trach that she has with another of the same size and hope that this brings her some relief.

Dr. Davis wants to schedule a visit to the podiatrist on the same day as the trach change since her toe is still looking funky, so we are working on coordiating the 2 appointments. It will most likely be next week.

Today Peggy has been working on the Father Damien plans. The kids from Holy Trinity are coming tomorrow to visit Peggy and start getting instructions on what they are supposed to do for the project.

Peg's Eyes, Moana Getaway and Dogsitting

Peggy's eyes are bad today. Michelle told us she had a rough night last night because of her eyes, so she is very tired and her eyes are still very red and irriated. She can barely open them and spelling is next to impossible. I called Ty and she told us that Peggy needs to close her eyes - she knows that Peggy does not like to have them both closed, so she suggested that we tape one shut for one hour and then the other. She also said that Peggy should only be using the Tobradex 3 or 4 times a day and that using it too much could be irritating and will also lead to glaucoma and cataracts down the line.

Lehua, Betsy, and I took some gauze, wet it, and then made sure her eye was closed and placed the wet gauze over it (we used the gauze from the a trach dressing kit). Then we put a cosmetic cotton round on top and then used medical tape to secure it. This was a little after 12, so we'll do it again to the other eye a little after 1. To be honest, Peggy was pretty non-responsive during this whole process, she was either sleeping or just couldn't get her eyes to spell, so we just did it.

I will be going back to the house in a little bit to check on her eyes and Ty said that she will check in this weekend. Some of my girlfriends are in town from the mainland so on a whim Eric and I decided to get a hotel room at the Moana...We plan to go surfing this afternoon and then Eric will watch the kids for me so I can go out with the girls! We have a party to attend at the zoo tomorrow, so it will be perfect - we'll be right there! I am so excited for this spontaneous mini-vacation!

We'll be leaving Maka at the house - I already asked Lolo and Peggy if they would dog-sit for us! We'll pick him back up tomorrow afternoon.

Still no word on Peggy's new trach...we're just waiting...

Mother's Day Review

Just a quick note to report how fabulous our Mother's Day was! It was so special to have Peggy over and our magical crew of Peg's Legs Angels who helped make it all possible. Peggy was so happy and proud to see Eric's gorgeous mural in the kids' room. It was so fun for Indy to have Puna in her room! Eric made a great video of the creation of the room - we're going to try to put it on the blog for all to see!

Jason's brother Damon is in town. He and Peggy had a nice visit last night. Today HCA is training a new bath aide - his name is Ferdinand. Peggy has her doc visit today, I'll have to blog the report later since I will be in and out of the office today.

Thanks to all for helping with all of Elroy's chores while he's in DC. Special thanks to Emma who cleaned the cat food area and actually tackled the nastiest fridge in Honolulu. You go girl - I gave up on that fridge 6 months ago when we found petrified cupcakes swimming in bloody meat juice.

Article in Today's Advertiser and Cuff Leak

Here is a link to Lee's story that ran in today's paper - http://the.honoluluadvertiser.com/article/2007/May/13/ln/FP705130376.html

Also - FYI - Cathy has confirmed that there in indeed a very slow cuff leak...but we are still trying to hold on until we get the new trach in since we don't want Peggy to have to endure 2 trach changes. Nothing to be alarmed about, we just need to keep monitoring her SATs and the cuff, adjusting the position as usual to make her comfortable. IT IS CRITICAL that we don't take air in or out at this time so that we don't further damage the cuff. Cathy will be checking in regularly to add air as Peggy needs it. We have put a RUSH on the new trach, so it should be coming in hopefully next week.

Have a great Mother's Day!

Weekend Update

Peggy was having more trach trouble yesterday. Same story. I told Peggy we just need her to hang in there until the new trach gets in. There is really not much anyone is going to be able to do about the gurgling, so we need to just make it through another week or so. Peggy told us that she can handle it. I asked Peggy to please not "overcall" HCA regarding this issue unless it truly is emergent - if the trach is not alarming and her SATs are good, then it is not really an emergency.

No one wants Peggy to be uncomfortable, but the trach/gurgling issue is going to be present until she changes out the trach (maybe even after) so we really just need to HANG IN THERE until the part comes in! If you do need to call HCA for Peggy in a non-emergent capacity, please be clear that it is non-emergent. For example, "Hi, this is "so and so" from Peggy Chuns. This is NOT an emergency, but whenever Cathy can give us a call, Peggy has some questions/concern about the trach". This way Cathy can know what she is dealing with. If she gets a call that says, "you need to call Peggy's" - she has no idea how to prioritize the issue. We are NOT their only clients and I do not want to abuse our right to call upon their nursing staff for assistance. I also don't want to end up in a "boy who cried wolf" situation and have them react too casually to a true emergency. Make sense?

Let's all work together to give Peggy a lot of TLC until this new trach arrives. We can all help her get her mind off her gurgling by shifting our energy to other things (again, I'm obviously talking about when her SATs are good and she is not in distress). Speaking of other things...

Lee Cataluna came by yesterday to interview Peggy about the Father Damien project. She told us that the story will run tomorrow (Sunday). She brought her 9 month old son with her, so he and Sawyer got to play together while Lee interviewed Peggy. We made a lot of progress yesterday on the Father Damien mosaic plan. This is going to be a lot of work, but a lot of fun and we have a lot of helpful little hands eager to help out!

Tomorrow is Mother's Day and we wish all you moms out there a FABULOUS and RELAXING day! We'll let you know how Peggy's visit to our house goes. We are so excited!

Peg's Legs Update: Happy May

This update went out today...

Aloha Peg's Legs,

Happy ALS Awareness Month! To find out more information about this national event as well as the ALS Association Advocacy Day conference in DC, please visit the ALSA website at http://alsa.org/

Elroy will be representing the Chuns at the conference this year as a guest of the ALS Association. He is excited to meet with the Hawaii delegates and hopefully Barack Obama (who graduated from Punahou just like Eric!) to share Peggy's story and help raise awareness. He hopes to bring home information on the latest ALS research as well as advocacy strategies. Go Elroy!

Peggy is busy working on her latest art project which is a watercolor mosaic of Father Damien. Peggy has been working with the children at Holy Trinity school on this project and is moving into the final stages of the project which is very exciting.

Peggy's new cats Jack and Cola couldn't have adjusted better or faster to their new surroundings. It is as if they have always known Peggy and lived in her home. They both sleep on her bed - especially Cola, who loves to sleep on Peggy's shoulder (right where Sara aka "Boo" used to sleep).

We're happy to report that Peggy's 16 year old giant orange cat Bug has adjusted to the new arrangement as well. In fact, late at night you will often find all three of them sleeping with Peggy. In fact, Bug has become somewhat of a father figure to Jack. They spend a lot of time together and you'll often see Jack following Bug around, learning about big boy cat things, no doubt.

If you are in Hawaii, please consider adopting from Joey's Feline Friends - the no-kill shelter where we found our precious kittens! They have so many adorable cats who need homes. They are a wonderful organization! And if you're not in the position of adopting, please consider a donation or volunteering for their non-profit organization. For more info, you can visit them online at http://home.hawaii.rr.com/joeys/

Peggy's health has been fairly stable. She has been having some trouble with the trach, but nothing unusual for someone who has been on a trach for so long. We are so blessed to have weekly telemedicine visits with Peggy's doctor and a great nursing staff, so this issue has been and will continue to be closely monitored. Peggy will be going in for a trach change in a couple of weeks. She has done this before and it is not fun, but it may bring some relief to some of her current discomfort.

Hope all of you Mothers out there have a fabulous Mother's Day! You deserve it! On Sunday, we are doing something very special for Mother's Day. We are bringing Peggy to our house in Kalihi Valley. Peggy hasn't been to our house for years and so she is coming to see all the work we've done on the house. We have also just completed redoing the kids' room. Eric did a beautiful mural in their room that Peggy can't wait to see.

Me ke aloha,

Kimi, on behalf of the Chun Ohana

Taking Care of the Caregiver

Here is a great article by Dr. Andrew Weil about Caregiver wellness...be sure you guys are taking good care of yourselves, OK..You are all heroes! http://www.usaweekend.com/07_issues/070506/070506caregivers.html

Update After Today's Doc Visit

Today Dr. Davis explained the risks involved with getting a new trach. He still feels like there is no medical necessity for a new trach and is not sure that it will solve anything, but he will support Peggy's choice. After hearing the risks and considering everything, Peggy has decided to get a new trach - she is going to get a longer trach, which will hopefully reach down past the part of her throat where the tracheal malasia is the worst. We are not sure if this will work or for how long it will work, but Peggy feels that it is worth the risk to try.

FYI - the risks involved include the obvious such as infection, pain and discomfort, etc. from the trach change. Peggy will also need to be sedated for this procedure, so there is a small risk of serious complication from that. There is also no guarantee that this will fix the gurgling. But Peggy understands all of this and so we support her informed decision. This new trach needs to be special ordered, so it will probably be about 2 weeks before it gets in.

Dr. Davis stressed to Peggy that it is VERY IMPORTANT that when she get this new trach she DOES NOT have people overinflate the cuff or we will definitely be dealing with this issue again.

Everything else seems to be going well with Peggy. We had lots of fun around the house today - lots of people around gabbing and laughing.

Update

Spoke to Cory who will be talking with Dr. Davis. The vent has been fine all day today - no alarming. Peggy has been trying (somewhat unsuccessfully) to nap this morning...her eyes are very tired making spelling difficult. I will post again once I talk with Cory again. Basically, as it stands right now, it seems that there is no true medical need for Peggy to get a new trach. However, we are discussing that further with Dr. Davis. The question we are posing to Dr. Davis and Dr. Druger is this - since it may bring some temporary relief to change the trach, could Peggy choose this option if she did so fully understanding the risks involved.

To the ER and Back Home Again

Just spoke with Helena. Here is what I know so far from talking with her - Peggy was having trouble again last night with the trach - lots of gurgling. It started on Marvel's shift last night and continued on into Helena's at 10pm...Peggy was complaining of an "air leak". The VTE was going down so low that the vent was alarming. So they made the decision to call 911. The EMT guys came and tested the cuff/trach with some type of connector and said that it seemed OK. They left, but 45 minutes later Helena says that it started up again. So they called 911 again at Peggy's request.

They took her to Queen's where she was seen by a respiratory specialist in the ER that told her that some gurgling and air leakage is inevitable because of the tracheal malasia. They asked if she needed another trach, but he felt that there was nothing technically wrong with the one she has, the problem is more the loss of integrity of the tissue/muscle inside her throat, where the balloon is. According to Helena, he stressed that every time the cuff gets inflated and deflated, or even if you squeeze that outside balloon too much, it exacerbates the problem. It may solve it temporarily, but it will eventually lead to more of a problem. Peggy and Helena returned home and things have been better with the trach. Helena said that Peggy was resting when I called at 6:45 this morning.

I will talk with Cory and Dr. Davis today to follow up today. Of course, the most troubling fact is that the vent was alarming. We can't have that continuing, so while a certain amount of leakage is understandable, it seems that we need to find out what our options are. I'll post more info as I get it. Thanks Team!

A few photos from the other day

We had so much fun the other day with all the kids! As I mentioned, Karen had her 4 grandkids and I had Indy and Sawyer. Peggy got up in the wheelchair to come and join the fun. We hung out part of the time in the house playing toys and telling jokes and some of the time outside swimming and catching crayfish. The cats loved hanging out with the kids. Jack was so hilarious. He was chasing the kids around like a dog. He even was chasing Indy one time and jumped (gently) on her butt as she ran away! She thought is was so funny.

Catching Up

Sorry - I've been too busy to blog, which mean I have tons to fill you all in on - here's the scoop:

1. The party for Sonia was fun and intimate. See photos above. We love you Sonia and we miss you already...

2. Still trying to figure out what we're going to do about Peggy's cuff/trach issues. Dr. Davis is feeling like we should not change Peggy's trach. He is not sure what exactly is going on and he is very adament that he would prefer not to traumatize the trach site. He feels that this is unneccessary trauma and that any benefit would be outweighed by the risk. We're still trying to isolate exactly what the problem is. There seem to be two issues. One is the resistance that we are feeling around half way down while suctioning. The other is Peggy's cuff discomfort and gurgling. We will continue to sort through this issue and keep you updated.

3. You will notice that the sink in the bathroom is out of service. The plumber was here last Saturday because the sink pipes cracked - it is a very old sink so repairing it is turning out to be a bit complicated. In the meantime, just use the other sink. Thanks!

4. Peggy and Shelly just signed the publisher's contract for their book, tentatively titled "The Watercolor Cat", written by Shelly and illustrated by Peggy. The publisher (Mutual Publishing) is aiming to have the book available by Fall - just in time for Christmas! So exciting! Peggy has a zillion markeing ideas as you can imagine. Our agent, Roger Jellinek talked with us last night about getting a list of people interested in pre-ordering...so start thinking if you are interested in getting on that list!

5. Did you all know that May is ALS Awareness Month? Here is more information http://www.alsa.org/news/article.cfm?id=637

Elroy will be heading to DC for the ALSA Advocacy Conference this month. He leaves May 13 and will even spend some time with family and friends in San Fran on his way home. He will be returning May 19. He is very excited about his trip and is planning to meet with Hawaii delegates when he is there. He also hopes to meet with Barack Obama! If anyone can make it happen - its Elroy!

6. Karen has 3 of her grandkids here at the house today. I'm going to go get Indy now so she can play with them - so Peggy has a house full of kids today!