The Secret...

So, I'm sure most of you have heard of "The Secret" by Rhonda Byrne. If you haven't, you should check it out at www.thesecret.tv . "The Secret" (spoiler alert!) is basically "The Law of Attraction" and this self-help DVD and book have been making headlines - mostly positive, some negative. Whether you like/believe in "The Secret" or not, I wanted to share some of The Secret's perspective on health that I find very insightful. I hope you all find these thoughts helpful as we care for not only Peggy, but for ourselves as caregivers:

- Thinking health is something we can all do within ourselves despite what may be happening on the outside
- Laughter attracts joy, releases negativity, and leads to miraculous cures
- Disease is held in the body by thought, by observation of the illness, and by the attention given to the illness
- If you are feeling a little unwell, don't talk about it - unless you want more of it
- If you listen to people talk about their illness, you add energy to their illness. Instead, change the conversation to good things and give powerful thoughts to seeing those people in health

Obviously, The Secret is not the answer to everthing. It can't explain the tough stuff, like why ALS exsits in the first place. I'm also not suggesting that we "change the conversation to good things" every time Peggy complains of trach pain. I do however believe that it is important to take a step back every so often and get some perspective. Perhaps we can take a moment to ask ourselves if we are giving energy to illness. Can we instead say and do things to ourselves and to others that give energy to health?

Personally, I'm going to start by changing my blogging habits. I don't need to give energy to Peggy's illness by treating every minor bump in the road as headline material (this isn't Fox News). I'm going to work on only sharing the vital info about Peggy's care and any changes in protocol, medication, etc. So, if you see more posts about good health, funny stories, parties, and fun - you'll know it's because I'm hoping for more of that.

New Hire

Welcome Lehua Silva to the Peg's Legs team! Lehua is Lolo's daughter, so you may see her training with mom first and then eventually training with other private hires before she flies solo! Yay! And FYI - Lehua is another Easter baby! Her birthday is on Wednesday.

Another Birthday!

I just found out that Marita Biven's birthday is 3 days after Marita Salassa's! So happy bday to Marita B. too!

Upcoming Birthdays and Easter Sunday

Forgot to mention, we have a few birthdays coming up:

Sunday, April 1 - Karen
Monday, April 2 - Marvel
Tuesday, April 3 - Marita Salassa

Also, please join us at the house for Easter Sunday around 2-5. Potluck, nothing formal. We're planning croquet, egg toss, and a visit from the Easter Bunny. Hope you can stop by for a visit!

Sleeping with Open Eyes, Feeding Machine, Citrucel

Sleeping with Open Eyes:

How many of you have seen Peggy fall asleep with her eyes open? If you haven't ever seen this, the first time can be very unnerving. Today, Pat, Pokey, Sawyer and I were talking and laughing with Peggy. All of sudden Pokey noticed that Peggy was just staring straight ahead and her eyes weren't moving. She asked Peggy if she was OK. It kind of looked like Peggy was mad and just staring because she didn't want to talk. Pat tried to use the spellboard, but Peggy was non-responsive. Finally, I told them, I think she's asleep and sure enough - she was! She had fallen asleep in the middle of all the action!

Peggy woke up and started moving her eyes around and spelling with us. She confessed that she was very tired (um, ya think?) and probably needed to rest. We were teasing her a bit about her narcoleptic behavior and promised to take a picture since she told us that she wished she could see herself. I've attached a photo of her sleeping so that you guys can see how she might look if she happens to fall asleep with her eyes open! Did we mention she was dressed like an Easter chicken?

Anyway, while a little freaky, it is perfectly normal and fine for her to fall asleep with her eyes open. And be warned - she sometimes will spell in her sleep! If in doubt, ask her loudly, "PEGGY! Are you awake??!!!"

Feeding Machine (from Lolo):

We have been getting the error message "DOSE DEL" on the feeding machine. This stands for "dose delivered". The error message and beeping is because the dose and volume are confusing. The volume should be set to zero because Peggy in on continuous feeding. The dose is set at 45 because she gets that amount in the drip. The machine is already preset and there is usually no need to change settings/push buttons. If the volume is set to 45, the machine will alarm because it has delivered 45, which is what it was told to do.

To reset the DOSE DEL alarm -
Press and release start-hold button until feed rate flashes 45. Press dose button. Press down arrow to zero. Dose button should show 0000.

Citrucel/Water Flush:

Per Dr. Davis - please give Peggy 2 TBSP of citrucel with 240 ml of water at 4pm and 8pm. This will be her scheduled water flush.

Respiratory "Cuff" Report

Here is the report from Respiratory Home Care:

Debbie checked the cuff pressure by using a tool called a "cuffilator". When Peggy has 15ccs in the cuff, the pressure is at 30-32 which is a little above the normal range of 18-27. While it is better to be in this "green" area, Debbie says that 30-32 is fine and normal since Peggy's been on a trach for so long. 15ccs is where Peggy is comfortable. Anything lower than that and she tends to get that "fluttering" and is uncomfortable. Debbie says that PEGGY SHOULD NOT HAVE MORE THAN 15ccs!!! She says that she is already at the edge of the safe zone and so adding more air to the cuff could be dangerous. Incidentally, there has been a rumor floating around that you can put up to 25ccs of air in the cuff, but that is WRONG and would be very dangerous!

Today we're busy here. Working on emails, decorating for Easter...the usual!

My Car Drama

I've been slacking on the blogging lately since I've had crazy car drama. My car has been randomly deciding not to start - usually at the most inopportune moments. I finally had to take it in yesterday and they worked on it all day so I was stuck without a car. They "fixed" it and did all kinds of stuff that cost us an arm and a leg. Well, fine, but then this morning my car wouldn't start. Argh. So I had to take it in again. Luckily we're borrowing our friend's van. Oh, well...enough about me!

Tuesday there was some trouble with the feeding tube. It just kept saying "DEL DOSE" whatever that means. So Apria came and they taught Lolo how to fix it. I haven't talked to her about it yet to get filled in, but they fixed it so that's good.

Today Respiratory Home Care is here to do a full vent check and also to check the pressure. Cathy is here too which is great. We really weren't sure if we'd see her again after Tuesday's maggot experience. I will post later the report from Respiratory.

MAGGOTS!!!!!!!

We're never short of excitement around here. Today, we spent a good time trying to track down a sickening smell. Well, our good pal Nurse Cathy found it - a nice bowl of catfood with maggots on Peggy's painting table! She picked it up and 2 maggot actually crawled up her wrist!!! Ewwwwww! Cathy was so grossed out she almost threw up! Peggy thinks it's the last we'll see of her (joke!). We all had a good GROSSED OUT laughing fit!

Dr. Visit today. Not too much to report...Dr. Davis is going to call Dr. Kimata to get more Botox for Peggy to help reduce her saliva. She's been feeling that choking feeling more often lately and she thinks that it is because the Botox needs to be redone. Cathy also had Dr. Davis call Dr. Druger to see how many CCs are "safe" to put into the cuff. Dr. Druger reported back that it is more important to worry about the "pressure". Anyways, Respiratory is going to come sometime and check the pressure - if they call before hand please call Cathy so that she can be here or at least call her to report what they say.

We spent a lot of time watching funny SNL vids on You Tube. So hilarious.

Happy St. Patrick's Day!

Hope everyone has a Happy St. Patrick's Day tomorrow! Just a few updates:

Peggy tells us that her hands have begun to cramp. She says they are starting to curl and so she would like to begin using hand braces again. She also reminded me that we have to follow up on the head brace for the wheelchair.

Cathy came by and looked at Peggy's toe. Dr. Davis also looked at it via camera. He put her back on antibiotics. Elroy should be picking them up tonight. Dr. Davis recommended doing warm compresses or warm salt soaks for the toe 3 x a day. He also wants us to schedule another appointment with the podiatrist so that he can trim the left side. Cathy says - NO PEDICURES while this is resolving please.

FYI - There is a new girl named Leslie from HCA training this coming Sunday, Monday, and Tuesday. She'll be on from 10p to 10a with the night nurse.

Peggy is beginning to plan a big party for Easter Sunday here at the Chun house. Peggy loves Easter! Guess it's time to pull the ol' bunny suit from the attic again. Somehow I don't think Indy and Jade are falling for it this year. But we'll still have Cian and Saywer fooled for sure - unless their older siblings spill the beans!

Toe and Eyes

Today we noticed that Peggy's toe is looking a little infected on the left side now. We have a call in to Cathy to let her know. The toe is bloody and a little oozy on the left. It is also red. The right side looks good though!

Peggy's eyes look great today. Andy and Suzanne said that they were looking red earlier. Peggy suggested that it might be a reaction to the gloves. They switched from gloves to bare hands (washing them frequently) and the redness went away. Hmmm...

Yesterday's Doc Visit and the Mosaic

Not too much to report from yesterday's doc visit. Peggy was feeling drowsy yesterday. She was also still complaining of trach pain, especially from suctioning. She was saying also that she has been feeling hungry lately. Dr. Davis, however, did not really have any suggestions for this. He didn't want to up her food intake or change anything. Peggy had been off the food for bath, so that could have caused the hunger feelings. Often, giving her a bolus of food can help take the edge off any hunger pains.

Today Peggy is busy working with Kelly on the watercolor "mosaic" called "Beginnings" because - great news - it was excepted into the Hawaii Watercolor Society Show! Yay! So Kelly is touching it up per Peggy's instructions. We will also be framing it.

Ear Doc Appt. Canceled and More Eye Stuff

Peggy is not feeling well today and neither is Marvel who has laryngitis (but is still on shift with a mask). Therefore, Peggy has decided to reschedule her ear doctor appointment for another day. Peggy is complaining of a "sore throat due to trach pain" according to Helena.

Peggy's eyes have been giving her trouble over the past few days. She was up in the chair on Friday and they were really bothering her. I brought Indy by to play in the afternoon and they were bothering her then. We stopped by Saturday morning around 11:30 and they were still bothering her. Very red and irritated.

Yesterday, Peggy wrote up a few more tips about her eyes with Marvel. Here is what she spelled out (I think this is mostly pertaining to nightshift, but this could also apply to naps):

"Start with PM Gel at night. Cover eyes with PM by blinking upward with lower lids. If you need to close top lid, use a Q-tip (gently place the Q-tip on top lid and slowly bring it down with Q-tip to close). If you see tears coming from my eyes at night, please wake me up because it probably means that my eyes are burning. If this happens, please apply an amount of TobraDex and then blink the bottom lid upward to spread over eyes. Even if I can't open my eyes, apply anyway because of the pain. The pain causes me to salivate more so I may need yankauring more often. The drool tends to soak the trach dressing, so it may need to be changed."

That's all I have right now. I did however, forget to mention that last week Wednesday Ty brought the talented musician Makana to Peggy's house during her shift. Peggy was up in the chair and since it was a beautiful evening, she was able to go outside. Makana serenaded her under the clear Nuuanu night sky. Peggy was in heaven!

Peggy's Eye Care: Straight from the Horse's Spellboard!

Here are Peggy's instructions for her eye care:

After night nurse puts in the PM gel, it is important that caregiver blinks "upward". During the day, I will ask for more PM if needed. Sometimes I will ask for a tiny bit of gel. Everyday requires a slight change in procedure. Please don't try to close top lid unless I ask. There is a method to my madness! You can use a Q-tip to bring down the lid. Ask Lolo or Marvel to show you the technique. When my eyes start burning, they become red. Please apply TobraDex immediately. Use a small amount in the both corners of both eyes and blink upwards.

GOODIES!!!

We've restocked the "caregiver fuel basket" in Peggy's room with lots of snacks for all you hardworking Legs. Please dig in! Sorry we only noticed yesterday that all you guys had to munch on were a few stale soda crackers and some old Christmas candy. So sad. Also - there are Cokes in the back office fridge - help yourself!

Peg's Legs Update: Photos and Our Blog

Here is the Peg's Legs Update that went out this morning. Remember - if you are not getting my Peg's Legs updates just drop me an email and I can add you to the list. If you used to receive the emails and now you don't, you may want to check your junk mail box and add my email to your address book. Because the emails go out to so many, your email program may be mistaking these emails as junk mail.



Aloha Peg's Legs,

Hope everyone is well and enjoying 2007! As promised, we have put some photos up online of the past few months. You can check them out here http://pegslegs.shutterfly.com

Peggy is as busy as ever and continues to "nose paint". Indiana even got to help the other day by painting Peggy's nose for her! Indy was thrilled...what grandkid gets to paint her grandmother's nose?!!!

We have started a "blog" for our caregivers as a way to share information regarding Peggy's medical issues and other things going on around the house. It is basically a virtual bulletin board that helps us to spread info to all of the many caregivers - it is great addition to our Peg's Legs system - only wish we thought of it years ago! If you are interested in checking out the daily happenings at Peg's, see the link at the bottom of this email.

Just a warning - our Peg's Legs blog may come across as a bit "alarmist". We share a lot of medical information daily. We are used to the issues that come up, but for those not in the middle of it all, it may seem a bit scary. Basically, the blog is a sneak peak at the front lines in our war with Peggy's illness. Therefore, it is not for everyone. However, you will also see how much fun and excitement we have each day at Peggy's.

We also have hope that perhaps the information on this blog may help other ALS patients, help other caregivers, and also serve as inspiration. It has really helped our little network.

Me ke aloha,

The Chun Ohana

Tuesday Update

Peg had her telemed doc visit today. This is a photo of her costume du jour - created by Peggy and Marvel! Here's the weekly update:

Eyes - same as last week. They are great today. She's been having problems on and off but for the most part they have been good. She reports that she has had no more problems with her eye lids.

Mouth - Peggy's teeth have been shifting due to the lack of muscle and movement in her jaw. She asys that it is painful when her teeth are clenched. She says that her back teeth are pushing up very high - she's worried that they may have to be pulled - but neither Dr. Cassella or Dr. Davis has mentioned this as a solution. The Oasis spray has been working (although Peg says she doesn't like the feeling since it feels waxy - but it helps with the dry mouth so she makes herself do it!)

Toe - much improved! yay!

Meds - Peggy doesn't like taking the extra Lorazepam in the morning - she says that it makes her too drowsy. However, she says that her mood has been good and she has been sleeping better.

Dr. Davis suggested a few things. He suggested getting a mouth guard from Sports Authority or a bite guard from Longs to help with the clenching. I think we may already have a mouth guard in the bathroom that Lolo got for Peggy a while ago...we'll check.

That's about it. Peggy's also been asking for a jock strap (!) to use as a chin strap. She wants to put a pad in the crotch part by her chin to catch any drool/moisture. She's nuts. We'll work on this...Lolo suggested that Peggy should nose paint the jock straps to make them more attractive. This led to a conversation about "The Nose Painting Jock Straps" which we all decided would be a great band name. We're currently holding audtions.

Suzanne is back - hooray! I can't fill her scheduling shoes - she is just too good! I totally goofed and forgot that we didn't have an A last night - thankfully, the wonderful Eric Chun and Jason Segler stepped in to save the day! We're looking for an "A" caregiver for the 6-10 shift on Mondays. Anyone available? Or perhaps we could find someone for Monday 10am to 2pm and switch Marvel to a 2 to 10 double. We'll be working on it.

Restasis Bad - Lorazepam Good!

Last night Peggy tried the Restasis eyedrops and had aterrible reaction to them. She said it felt like someone had put chili peppers in her eyes. It took a long times for her eyes to stop burning, so she is tired again today.

Cathy came by talked with Peggy about taking an extra Lorazepam at night. She currently takes 2 and so she should space out the third by taking it earlier or later than the other 2. Lorazepam (also known as Ativan) is used to relieve anxiety, panic attacks, and insomnia. Cathy also said that Peggy could take the Lorazepam during the day to help with her anxiety/help her get some rest.