Wednesday, January 31, 2007

New Meds for Peg, Trach/Cuff Stuff

Cathy came and delivered a bunch of new stuff for Peggy. Here's the scoop:

1 - Antibiotic: Cephalexin Suspension 250mg/5ml. Dose is 10 ml per g-tube every 6 hours for 1 week. First dose was at 4pm so it should be 4pm, 10pm, 4am, 10am. This for the possible infection in Peggy's toe. THIS NEEDS TO BE REFRIGERATED SO WE'RE KEEPING IT IN THE OFFICE FRIDGE.

2 - Oasis Mouth Spray: 2 sprays every 2 hours by request. First spray in mouth (one spray to the right and one to the left) then take an oral swab and move it around the mouth. This is for Peggy's dry mouth. She says that it tastes like mint gum! This is what we're starting not exceed 60 sprays in 24 hours.

3 - Mylanta: 2-4 teaspoonfuls (10-20ml) 4 x a day (by request). Do not exceed 24 teaspoonfuls in 24 hours. This is for Peggy's reflux which Peggy tells us is worse in the morning during bath.

Helena brought in lots of gauze for Peggy's trach care. So Peggy got new gauze instead of that other stuff that they were using which shreds up and is not a good idea to use around her trach area.

Peggy's been complaining about the inner cannula not locking tight. Cory suggested taking the one in the travel bag and using that one and putting the one she has now in the travel bag since a new one won't be covered by insurance. We're checking to see when her last cannula change was and if she will be changing it again. As Peggy says, they usually change it when she starts having a lot of trouble with the cuff. I'm not clear about all this stuff, but I'll work on getting it clarified.

Cathy is going to check Peggy's cuff/trach today. We'll let you know what she says.

Peggy's been matting and naming some of her latest nose paintings with Marvel today. They are so beautiful! Peggy's been trying to convince us to cut her hair for her before her KHNL interview tomorrow but none of us know how to cut hair! We're all too scared we're gonna mess it up. But I think she's gonna convince Marvel to do it by the end of the day!

Tuesday, January 30, 2007

Ty and Dr. Tim Look at Peggy's Eyes

"Dr. Tim" who is an opthamalic (sp?) surgeon came by this afternoon with Ty Jenkins to look at the possibility of doing a little plastic surgery on Peggy's eyes to relieve the dry eye. However, he feels that this would NOT be necessary at this point.

His recommendation is that Peggy try to wear goggles during the day in order to create a "moisture barrier" around the eye. Ty will be bringing by some goggles tomorrow. We're testing the theory with a clear patch right now. It has a foam edge to it and Dr. Tim suggested that we put vaseline around the foam in order to make a better seal. We will also need to get some "anti-fog" stuff for the goggles - like the stuff that divers use...Remember to be careful when putting glasses, patches, goggles, etc. on Peggy's face/eye area so that we don't do any damage to her cornea.

One note - we've noticed that the glare off of the patch makes spellboarding a bit, if its not one thing its another!

He says that he recommends trying this before anything else. If this doesn't work, then he actually said that he might consider using some eye "superglue" to close up the eye a little more. This lasts about 2 or 3 weeks. Superglue her eyes? Yikers! Let's hope the goggle solution works!

Ty is also going to be replacing the little plugs that go in Peggy's tear ducts. She had this procedure done at the bedside already around 6 months ago and Ty thinks that it needs to be redone.

Ty's going to try to get samples of Refresh PM since Peggy is going through so much of it now. Those tiny little tubes cost $12 a pop!!!

FYI - Rumor is that KHNL will be coming at 3pm on Thursday to check out Peggy's Nose Painting for Punahou Carnival!

Tonight, Eric, Indy, Sawyer, Elroy, and me are all here with Lolo and Peggy to have dinner with Shelly Bellman who is Eric's Godmother! She is visiting from Maryland and hasn't been here in 10 years!

Doctor Visit Report, Dentist Scheduled

Peggy had her Tuesday telemed doctor visit this morning. Today, Hanna dressed her as "herself" - she was wearing her Goddess cap, a goddess shawl, huge heart shaped glasses, and a homemade mask of her own face with a BIG SMILE. It was a hit! Here's the update from her doctor visit:

Peggy's ingrown toe is definitely looking a bit infected. Dr. Davis is putting her on antibiotics to be safe. In terms of "toe care", please keep it dry, clean, and DO NOT apply neosporin. Why? We don't know...perhaps to keep it dry. Also, keep filing it down in the middle to encourage the nail to grow out on the sides and lessen the pressure.

Dr. Davis has also recommended "Mylanta" for Peggy's reflux.

Peggy's dentist, Ed Cassella, will be making a visit to check out her chompers on Saturday afternoon. He has made some suggestions regarding her dry mouth issues. The technical term for dry mouth, in case you're wondering, is "xerostomia" - you learn something new everyday. We will keep you posted if and when we implement any new mouth protocol.

Peggy is very tired today. Her eyes are especially tired and irritated, making spellboarding a little tough. But she's been taking cat naps to catch up on her zzzzs.

We had one private hire applicant come in for an interview today. His name is Roger. He was very charming! He had taught Shakespeare for many years and so entertained Peggy with a soliloquy from Henry VIII. He is a screenplay writer and has written over 14 screenplays thus far! He shared with Peggy that if he is hired, he will serenade her with some of the songs from his latest work, "Shakespeare, the Musical". Peggy was very amused. It is definitely never dull around here.

Visitors to the house today know that it would have been a good idea to wear galoshes since the awai is totally overflowing. There are guppies crossing over the concrete walkway to the house. The good news is that our power has been stable despite the wind and rainy weather.

Monday, January 29, 2007

Peg's Legs Update: Nose Painting

Here's the Peg's Legs Update I just sent out today:

Aloha Peg's Legs,

Hope everyone had a great holiday season. Ours was fabulous...we'll be sure to put some photos online soon of all the happenings around the Chun house.

Speaking of photos - we've added some photos of Peggy and latest adventure in the arts - NOSE PAINTINGS! You can click here to see the photos

You can also view 5 new Peggy Chun original nose paintings at the Punahou School Gallery at the Punahou Carnival this coming weekend Feb 2nd and 3rd.

Each of Peggy's original nose paintings, which retail for around $300, come with information about the process, written by Peggy. Here is what she says:

"I am a watercolor artist. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 2002. When the ALS caused me to lose the use of my dominant hand, I began painting with my left hand in 2003. When my hands could no longer hold a brush, I painted holding a brush in my teeth in 2004. When my mouth could no longer hold a brush, I painted digitally with a computer that I could control with my eye movement in 2005 and 2006. Now, due to my inability to blink, my eyes are too dry to paint with my computer. But my creativity knows no bounds.

One of the things I miss the most, is the touch and the experience of painting; the sensual nature of the paper and the paint. So, as the next phase in my artistic evolution, I have begun “nose painting” with the help of painting assistant.

I work with an assistant who does all the preparation and is fully involved in the painting process. We begin by my choosing a palette for a particular concept. My assistant sets out the paint in order of the progression of color I think will work together, usually 5 complimentary colors. All of my nose paintings are done “wet into wet”.

Next we choose from an assortment of “nose strokes” I have already described in detail and organized on a chart. This chart eliminates the tedious work of having to spell out directions each time on my communication spell board. To begin, my assistant paints the tip of my nose with the colors I’ve chosen as the base colors. Next, she picks up the paper and moves it parallel to my nose using the stroke I’ve chosen. We continue to use the paints and the strokes in the order I have chosen. Each time I change colors, my assistant has to wipe the paint from my nose and dry it before applying the next color.

Inevitably, while painting I begin to see images emerging that cause me to change my original plan. This is challenging because we have to work fast to keep the paper from drying. I find this to be the most exciting part about painting abstractly. I name my pieces based on what I see and feel, but take great joy in hearing what others discover in my paintings.
I hope you enjoy these original nose paintings. I have never felt more challenged as an artist and am pleased to share this part of my artistic journey with you."

So as you can see, Peggy is as busy as ever. She's been enjoying having a baby around the house again too. Little Sawyer is now 5 months! Big sister Indy is 3 now and loving preschool.

While Peggy's ALS has slowly progressed over the past year, bringing various challenges, she is blessed with the best care in the world which has kept her infection-free and comfortable. The biggest challenge has been Peggy's eye health. Since she has lost the ability to blink her eyes on her own, she struggles with dry eye which unfortunately has interfered with her use of the ERICA computer. But our caregivers are fast and efficient with the "spellboard", which is a good thing, since Peggy has plenty to say!!!

Until our next update...

Me ke aloha,

The Chun Ohana


Friday, January 26, 2007

Archinoetics Visit and Dr. Davis Makes a Housecall

Yesterday afternoon Evan and Erin from Archinoetics came by for a visit (they are the Brain Wave Guys). They came by to touch base with Peggy to find out when they will start working again with her on Brain Wave Painting and more research. We also had wanted to talk with them about the possibility of using their technology in the event that Peggy should lose her ocular movement. We all talked at length about this and the bottom line is that while they are more than willing to be there for Peggy with their equipment, they feel that Peggy should not rely on their technology as a means of communicating if she were to lose her ocular movement.

They told us that their technology works on an inconsistent basis and the system at this point in their development is just not reliable. They have worked with at least 2 other ALS patients who are totally locked in and have no ocular movement. With them, some days they would seem like they were 90% sure they were getting a "yes" or a "no" and other days it wouldn't work or they would be only 50% sure. So, they wanted to stress that this would not be a good way to communicate a major decision. They do hope to get funding soon that will help further their development and move things along, but they are not sure of the timeline.

Dr. Davis and Cory and Cathy from Healthcare Alternatives came by also to touch base. They were able to meet with the Archinoetics gang which is great since Evan is going to put Dr. Davis in contact with some of the other ALS patients they have worked with. Dr. Davis hopes to talk with their doctors so that he can learn more about the more advanced stages of ALS.

While Dr. Davis was there in person, he did a full exam on Peggy. Here's the scoop:

EYES: Doc did an eye exam on Peggy, testing her ocular movement and looking for any double vision. He said her eye movement looks strong and that she has pretty good "convergence" which means no real double vision problems. He looked at the stye which I realize now was on the TOP lid, not bottom. He said it looked fine.

MOUTH: He looked at her teeth and confirmed that one has shifted backwards. He did not see any of the chipping that she had mentioned. He suggested that we call her dentist, which I will follow up on. He also said that swabbing Peggy's mouth more frequently might help with the burning sensation she sometimes gets. Peggy told us that she likes the swabs.

CHEST: Said Peggy's heart and lungs sound really good

TOE: He checked out her ingrown toenail and cut a bit of the nail - ouch! He suggested weakening the middle of the toenail with a file - you'll see where he drew a black triangle on her toe to show where to file it down. He said weakening the middle should encourage the sides to grow out and discourage ingrowns.

ANKLE: He said that the pain in Peggy's ankle doesn't seem to be a real problem. He thinks that since it is "positional", perhaps her boot is pinching a cutaneous nerve where she broke it in 2002. He suggested propping the boot in a different way. Cory brought up concerns about Peggy using the chi machine so much at night. She's worried that because Peggy has lost all her muscle that her joints are succeptible to strain and dislocation. But Peggy didn't feel that it was the chi machine.

That's it for now...

Thursday, January 25, 2007

Ingrown toenail, back up battery delivered

Peggy has an ingrown toenail on her right big toe. It is very red and swollen. Doctor Davis will be making a housecall this afternoon, so we'll let you know what he says.

Debbie delivered our extra back up battery. She says that it should be fully charged. When she came, it saw that it was BLINKING GREEN which means ERROR. She unplugged it and plugged it back in and it turned to solid yellow which means it is supposedly charging. We'll see.

Peggy's EYE STYE is much better today. Yay! Incidentally, Lolo has informed us that you get styes in your eye from "peeing in the road". Naughty Peggy.

Peggy just finished writing a great description/bio to go along with her new nose paintings. Peggy has selected 5 of her nose paintings to show at Punahou Carnival (Friday Feb 2 and Saturday Feb 3). Go check out her work at the carnvial gallery!

Peggy has also started a "funny spellboard moments" log on the back of the sliding door of her bedroom. Please add to it when you have a moment like this - we've been cracking up telling our funny spellboard stories!

On a personal note, I'm feeling so much better. I hated to have to take antibiotics, but boy do they work! So, I'm definitely on the mend. Thanks everyone for all your TLC and concern!

Wednesday, January 24, 2007

Eye Stye, Battery Charger

Peggy has developed a stye on the lower lid of her left eye. An eye stye is a common infection of the hair follicle of an eyelash. Styes occurs when staphylococcal bacteria infect one of the tiny glands at the base of the eyelid hairs and then becomes inflamed. This is a reminder that everyone needs to WASH HANDS FREQUENTLY AND THOROUGHLY before touching Peggy's eyes to blink her or administer eye drops.

Denise recommended warm compresses to alleviate the pain and help heal the stye. However, Peggy eye must be taped down before the compress is applied to avoid scratching her cornea. Check in wiht Peggy to see if she needs a compress. Eye styes can last anywhere from a few days to a couple weeks, but Peggy's seems to be getting better already.

Peggy's vent was indeed switched back to the LTV950 yesterday. We are still having trouble with the external battery. As I mentioned before, Denise is working on this with Nancy from Respiratory. There is some confusion on how to read the light signals on the new charger. Here is the code:

Blinking green: ERROR
Blinking yellow: Battery is 80% charged
Solid green: Battery is ready and fully charged
Solid yellow: Battery is charging

Tuesday, January 23, 2007

Doctor Visit and Other Updates

Peggy had her tele-med doctor visit today. Here is what was covered:

Peggy has ingrown toenails on both her feet. It seems that the one on the right foot started smelling last night so Eric the nurse washed it well and Dr. Davis now knows about it.

Peggy is still experiencing pain in her ankle (and above) where she broke it in 2002.

Dr. Davis is going to come in and take a look at Peggy's teeth in person. She has been having issues with "involuntary teeth clenching" - basically if her head is in a certain position her jaw will kind of "lock up". Peggy thinks that this has caused some of her teeth to chip.

Peggy has been feeling HUNGRY more often. Please always make sure she is hooked up to food and also check in to see if she may need a food "bolus". To give a food bolus, you can start with 60 cc of food from the bag and see if that improves how Peggy feels.

Peggy's eyes are BURNING all the time, especially if she doesn't get the Refresh PM gel in her eyes. Please please please lube up her eyes!!!

That was it for the doctor visit. Other than that, a few more updates:

Vent/Battery - Respiratory said that they will be bringing Peggy's old LTV950 vent back sometime today. Also - I can't believe I'm saying this - the battery is not charging again. The battery charger is blinking "error". Denise is handling things with Nancy directly. Not sure what's going to happen next.

I've posted another ad on Craigslist, this time for a paid caregiver to come in from 8-11am to assist the HCA nurse with Peggy's bath and morning routine.

WATCH OUT FOR THE RAMP! It is SLIPPERY! Kelly moved it to the side today since it is so rainy. We will work on getting some non-skid stuff, but until then please use the stairs and please be careful!

Monday, January 22, 2007

Kimi Health Update

This is about Kimi, not of you may have heard that I hit with mastitis AGAIN. Only this time it was much more serious. I started feeling feverish Friday and actually ended up in the emergeny room with a 104 degree fever on Saturday. I was given antibiotics and am feeling much better finally today (Monday). I was laid up all weekend with fever, but thank goodness for my amazing husband! Eric took care of me and the kids all weekend. What a guy.

So, while I have to nurse through the mastitis to help it clear up, you can bet that Sawyer's days on the boob are numbered. I gave it a good shot and made it 5 months, but I think this is it. The good news is that he has no problem with a bottle and we've found a great organic formula that he likes and tolerates well. Plus he's raring to eat real food, though we're trying to hold him off for another month or so.

So that's my news. I should be back in to work tomorrow, though I'll be taking it easy this week as I recover.

Friday, January 19, 2007

Battery Update

Denise called. She went to Respiratory and after troubleshooting about 6 batteries they had, they finally found one that worked. They figured out that it seems to be the battery case prong receptor thingy. Anyways, Denise is bringing the one battery that they found that works and the charger back.

Denise's Visit, Pain and Medical Issues, Iron and Prune Juice, Battery...

Peggy had a nice long visit with Denise today. Denise was checking in with Peggy on many issues such as her pain and other medical concerns. Denise also brought up some tough but important stuff. Dr. Davis and HCA and everyone really want to be sure that we have a plan in place IF and WHEN Peggy should lose her extra-ocular movement. While it is not common for people with ALS to lose this function, it is possible. We want to make sure that we have a way for Peggy to communicate her needs and wishes to us should she lose her ocular movement.

As of now, we are planning to ask Evan/Archinoetics (the Brain Wave Guys) to come in and practice getting yes/no answers from Peggy by tracking her brainwaves. If she were to suddenly lose her eye movement, this could be a way we could communicate at least yes or no. Denise assured Peggy that she and Dr. Davis are not bringing up this issue because they are worried that her eye movement is going to go soon, but rather just to be prepared for anything. It is the smart and responsible thing to do to discuss these issues now while we can communicate clearly with the spell board.

Peggy told us that she is very interested in being able to someday participate in a gene silencing trial that would see if the ALS gene she has could be "silenced". I spoke with the doctor conducting this trial a few months ago and he confirmed that the ALS gene in Peggy's family would indeed be "silenced" - this is big news since there are many variations on the SOD1 mutation. However, Peggy did not qualify for the first run of trials since she is on a vent. He thought that perhaps within a year she might be able to participate. Also, this gene silencing therapy is not intended for those that carry the gene but are not showing symptoms of ALS yet.

The bottom line is that Peggy expressed that she really is interested in helping her family by participating in any trial that she can. She says that she is concerned about others having to face this illness. She also is interested in preserving her extra-ocular movement.

Peggy talked a lot about her pain and other medical issues. Here's the summary:

Peggy's pain is chronic. It is mostly trach, eye burning, and aching in her right leg where she broke her ankle in 2002. Also, if the chin strap is off too long then her mouth dries up and her saliva burns her mouth. She also has pain in her mouth where her teeth are shifting and she thinks that perhaps they may be chipping too.

She's worried also that her mouth/jaw is getting stiff and harder to close. It feels like it is going to "freeze" up. She also feels like her neck is going to "break". Denise assured her that Dr. Davis says this is very unlikely. However, they are ordering a hard neck brace and some arm slings for Peggy that she can wear especially during transfers. This would give Peggy more confidence for sure. They will be sending someone out to fit her for a brace soon.

Denise made some suggestions regarding Peggy's pain managment as well. Dr. Davis has decided to switch from Motrin to Aleve. He says it may last longer than the Motrin. The trick is that Peggy doesn't like to be sedated, so they have to find the right amount to help the pain without making her loopy. Peggy says that if she stays ahead of her pain with oxydose she does pretty well.

So...on to other matters:

A reminder from Cory - Peggy is taking Ferrus Sulfide which is an iron supplement. It can be very constipating, so please be sure to give her normal 60 cc of prune juice at 6pm. Don't forget!

Another reminder - PLEASE DON'T LEAVE MIXED MEDS/VITAMINS without letting the next shift know what they are!!! Also, please please please be sure to take the time to clean the syringes before you leave! Otherwise they are so hard to get clean.

BATTERY UPDATE: Our spare battery still never arrived. Denise called Nancy from Respiratory to let her know that the battery we do have is not charging! The yellow light on the charger was blinking indicating that it was not actually charging the battery. Also, we have only been getting 2-3 hours on this new battery.

So, Denise took the charger and the battery to test it at her place to see if it was our "wiring" as Respiratory suggested it might be. She also has a battery that has 8 hours on it so she was going to bring that back to try it out with Peggy. BUT, when Denise tried it out at her place, the charger wouldn't work on either our battery or hers, so she is going to Respiratory to get a new charger. That's where we're at. I can't believe how much battery drama we've been dealing with. This is such a critical issue.

Peggy made a lot of progress on her Christmas sorting thanks to Marvel and Betsy. Marvel had to leave early, so they rescheduled Peggy's nose painting for later.

Thursday, January 18, 2007


We need to let Nancy know that the battery has been on the charger since 2pm yesterday and it still has not reached the green "fully charged" status. Not sure what that means. I'm going to scream.

Power Outage, Battery Update, Reflux, and More

Yesterday we had a short loss of power around 1:30pm. It lasted only about 3-4 minutes. Pat Gamble, Connie Carr, and Karen did a great job of getting Peggy on the external battery right away. They were just about to get the generator going to plug in her bed, yankaur, etc. when the power came back on. We were lucky - Hanna said the power was out for an hour at Queen Emma's.

So this brought to our attention that the external battery didn't seem to be fully charged. Not sure why. Please be sure to recharge the battery after using it. And remember that now we have a new type of charger. We no longer have to remove the cover of the battery which will prevent damage to the wiring which indeed seemed to be the problem.

I talked to Nancy from Respiratory and she said she would bring our spare battery last night, but she did not. Hopefully it will arrive today. She told me that she got all the wiring fixed on a bunch of cases. I asked her to price out another type of battery for us. This type of battery would possibly last us 24 hours. But it is more expensive and very large. We'll keep you posted.

Another reminder - Please remember to sit Peggy up in the bed when she is hooked up to the feeding tube. When she is hooked up and reclined she gets reflux.

I left the house in the early afternoon yesterday since I'm feeling a little under the weather. But Eric brought Sawyer back to his mom's house to see a very special visitor - his Godmother! It has been 10 years since she was here last.

Peggy is planning to do Nose Painting with Marvel tomorrow afternoon. I have scheduled Marvel to stay for an extra 4 hours after her morning 10-2 shift so that she and Peggy can focus on painting. Lolo will be coming in from 4pm to 10pm to overlap/relieve Marvel.

And FYI - Peggy has decided not to go to the HCA party on Saturday.

Also - if you're wondering what all the crap - oops - I mean "super special project" is in Peggy's room, she is working on going through all her Christmas decorations before they go back up to the attic.

One more cute thing - Sawyer loves Peggy's spellboard. He always tries to attack it and grab it when we're spelling. So Peggy had the great idea of making a mini one for him! So we made one out of and 8x10 mat! It is the perfect size and he LOVES it! You have to seem him with it - it is so adorable!

Tuesday, January 16, 2007

Doctor Visit and Goddess Video Footage

Today Peggy had her Tele-Med Doctor visit with Dr.Davis. She was complaining of pain - says it has been higher, but it's not body aches so much as trach pain, mouth pain, burning eyes, and an old ankle injury. Dr. Davis has also put Peggy on some iron because her iron levels were a bit low. Peggy says she has "tired blood".

Ty Jenkins is bringing a plastic surgeon in next week to possibly do a little bedside surgery on Peggy's eyes. The idea is that they will surgically sew shut a tiny bit of her eyelids so that her eyes don't dry out as much. As scary as that sounds, Ty assures us that it is common for people with dry eyes and won't make her look much different.

Catherine (Healthcare Alternatives RN) told us that it is better that we do doctor visits at noon - it's easier to catch Dr.Davis at this time rather than in the afternoon. Peggy missed her doctor visit last week because she was too tired to do it at noon last week.

Healthcare Alternatives invited us to their New Year's party this coming Saturday. Peggy wants to go, so we'll be making arrangements for it this week.

No real news to report on the battery. We got about 3 hours on the one they gave us. Better than nothing. They have not yet delivered our spare. I need to call them. Pacific Island Medical delivered a new yankaur machine for us last Friday night, so that's great.

Today Marita brought with her some video that Joyce Hunt had put together of the "Goddesses". The footage was from about 10 years ago. It was so fun to watch! We got to watch Peggy painting in her studio in the attic, partying with the goddesses, camping with the Beamers. Wow. It was such a trip to see what Peggy's house looked like too! Oh, and one of the day's highlights was when Marita held Sawyer up above her head and he spit up on her face! It landed right on her mouth! Priceless :)

Friday, January 12, 2007

Jake Shimabukuro, MORE BATTERY DRAMA, and lots of phone calls...

Fun day at the house today - Ty Jenkins and her office staff came by for lunch and brought Jake Shimabukuro with them! This was sort of an early birthday celebration for Ty, so Jake put on a little private concert for everyone. He is so talented! Peggy loved it and told him his music was "stunning". Marvel, Karen, and Betsy got Peggy up in the chair for the party, so it was a great opportunity to test the new fully charged battery that Respiratory Home Care left us yesterday.

Debbie also brought a new charger to Marvel in the morning. She hooked it up to the battery and said that since the battery was fully charged that the charger should have a green light in just a few minutes. Well, it was on the charger for an hour and a half at least and still didn't say that it was fully charged.

Then, when Marvel went to hook Peggy up to the external battery, the vent said that it wasn't on external power. Argh. So we plugged her into the wall and called Respiratory AGAIN. They were stumped of course and said they were super busy, but said that our other spare battery was fully charged and ready but we had to come get it if we wanted it. Finally I spoke with the director Nancy and she sent someone out to get the battery and the battery cable to test it at the office. They promised they would expedite all of this since that would leave Peggy without a backup. So that's where we're at now.

However, in the mean time, Peggy made a great suggestion to call the manufacturer, which we did. They were very nice. Their number is on the vent and I highly recommend calling them if we need to troubleshoot anything technical since they were very helpful and very knowledgeable. They told us that it sounds like the battery is beyond its shelf life and that we really should be able to get more like 8 hours not 4. Hmmmm...They also told us it sounded like we need a new battery CASE and sure enough, we looked and the wires were frayed. We also told them that the internal battery only gives us 10-15 minutes. They think that the internal battery also needs replacing. Great. We'll keep you posted on all of this. Argh. Argh. Argh.

So, when it rains it pours and today the suction machine was giving us problems too. So we called and they are bringing a new one out. Peggy mentioned that the yankaur tip is giving her trouble. She says it's too big? I'll have to find out more...

We also discovered recently that Apria has been sending us the wrong feeding tube bags. They gave us gravity ones and we need the Kangaroo ones with the red caps. So they sent someone out today to bring us new ones and we gave them all the wrong ones. Lolo wrote on the box when the bags were delivered. Great idea! So from now on, WHEN ANY SUPPLIES ARE DELIVERED PLEASE WRITE THE DELIVERY DATE AND YOUR INITIALS ON THE BOX!

Eileen delivered the Baza cream, but couldn't get the oxydose, so that will be delivered on Monday. Peggy has a whole unopened bottle, so she should be fine until then.

OK, I'm clocking out for the weekend. Have a good one everyone!

Thursday, January 11, 2007

Peggy's Eyes, ERICA attempts, and the BATTERY (argh!)

Today I spent all day in Peggy's room working on her ERICA computer. I cleaned it off (it was buried in mosquito coils, old mail, and other crap), organized her files, updated and repaired her whole system, fixed up her email, imported a bunch of contacts in her email address book. Of course in doing this, I may have erased some of her email - oops! Sorry Peggy. So if you have sent her anything super important via email recently you may want to resend it. I also screwed up the internet connection, but was lucky enough to get Dr.Davis on his cell phone and he helped me reset up her connection (called "raffles").

We spent a good hour trying to get her on ERICA, but unfortunately it kept failing. It doesn't work when her eyes are "burning" and dry and so we had quite a hard time. This is the first time she has tried ERICA in a few months I think. It started to work better once we got her eyes lubed up, but we had a visitor come just when her eyes started getting better - so we stopped. To be clear, this seems to be a dry-eye issue and not an ocular movement issue. Of course, the dry eye is caused by the fact that she can't close her eyes. Her eye movement seems strong enough for ERICA to work, we just need to work on giving her more eye drops...So, PLEASE give Peggy Refresh "Gel" drops as often as you can. Every 30 minutes at least, more often if possible. We'll see if this helps with ERICA. We'll keep trying.

HERE'S THE SCOOP ON THE BATTERY: I called Respiratory today and got Debbie to bring us our back up battery along with a new charger. Thanks to Pat Gamble's comment on my post, I saw that the battery we had was not charging all the way. Also, when I went to check on it - it was very HOT! You could have fried an egg on it! When I told Respiratory they said that means it must be the charger, so along with the extra battery they brought us a new charger! Sounds great, right? Well, when Debbie tried to test the battery we have (the hot one, remember?) she discovered that the new charger wasn't working - argh!

So - Debbie has taken with her the broken charger, the new charger that doesn't work, and the old hot battery. She left us with a NEW fully charged battery that will give us 4-6 hours and will be bringing back a new charger tonight or tomorrow. Phew! OK, so that's where we're at.

Please note, poor Debbie slipped on the ramp when she came, so please be careful - it is very slippery out there.

Elileen from HCA called and said that she will be bringing Peggy's oxydose tomorrow. I called to let HCA know that they have to bring Baza cream - they will bring it by tomorrow.

Also - "Rochelle" from Healthcare Alternatives will be training tonight 10pm to 10am and through next week. So if you see a new face, please introduce yourself!

We had some nice visitors today. Suzanne Maurer dropped by and hung out for while. Also, a delightful woman named Harinani Orme came to visit and share her artwork with Peggy. She does amazing acrylic paintings of Hawaiian portraits. She gave Peggy a gorgeous print of a Hawaiian mermaid because she dreamed of Peggy swimming.

Wednesday, January 10, 2007

External Battery, Volunteer Recruiting, Nose Painting

Regarding Peggy's battery:
We have been having major issues with Peggy's external battery for a while now. It doesn't seem to be holding it's charge and doesn't seem to give us the full 4-6 hours we should be getting out of it. It loses juice while just sitting there. Not good. However, we've been logging it and if it is fully charged it will give us at least 3 hours on average. But still not ideal. Respiratory has been notified, but they can't figure out what is wrong with it. They suggested that we need to have an electrician come look at the outlets. Until I get that done, I have ordered another battery to have around the house. They should be delievering it today or tomorrow. We'll see if we have the same prob with that battery and if we don't then I'm getting the other one exchanged. But at least now we'll have 2 batteries on site always.

FYI - we're looking for more "B volunteers" to help our "As". I've posted an ad for volunteers on Craigslist, so hopefully we'll get some response. We'd also love to train more As. If any of you have friends who would like to join the Peg's Legs crew, let us know! Or better yet, bring 'um along for a shift to try it out!

Nose Painting:
Have you heard about Peggy's nose painting? Ask her about it! It's great! Peggy is so happy to be painting again. Marvel has been assisting her with this project. They are working on a spellboard design specifically for nose painting!

Aloha Peg's Legs Caregivers

I created this blog so that we can do a better job of keeping everyone in the loop this year! So much goes on at the Chun Household and there are so many amazing angels involved in Peggy's care, that circulating information has been our challenge. Let's try this out and see if this works!

I will work on posting important information and your job is to email me or Suzanne things that need to be posted. Also, please be sure to add this blog link to your favorites and check it often, especially before your shift.

And of course, this is a public blog that anyone can view so please blog nicely and watch what you write. This is a place to share information, not to vent or talk sassy - nuf said.

Happy New Year!