Wednesday Update

Due to anxiety and discomfort, Peggy did not get to sleep until after 5 this morning. So she is very tired today. Her SATs were good - 95 to 97 on room air, but Peggy felt like she needed oxygen. Dr. Davis and Cory wanted to make sure that Peggy understood that there are risks to using oxygen when you don't clinically need it. Dr. Davis had not wanted her on it unless her SATs dropped to below 92. But since Peggy really felt like she needed it today, he said to go ahead and put her on.

Peggy's eyes are much better and look good today despite the fact that she got no sleep - which pretty much blows my theory on her eye problems being related to her sleep deprivation. Her eyes were good yesterday and then in the afternoon they got bad for a bit again. It was right when Lolo started her shift, so our new theory is that she is allergic to Lolo. Just kidding - cause by 6pm they were better again and Lolo was still on shift, so it's not her afterall (but it was a good theory).

Lolo was on today from 10 to 2 and she was busy busy busy! Peggy was so tired that she missed her morning bath routine and so today Lolo, Pokey, and Cathy got her all cleaned up and bathed and did her oral care. So that's the scoop. And last but not least - don't miss LOST tonight!

Peggy's Eyes BETTER!!! Dr. Visit Report

Peggy's eyes are back to almost normal today. Phew! Here's the update:

Ty came by last night and looked at Peggy's eyes which were extremely red and irritated. Ty gave her an eye lubricant called "TobraDex". This ointment contains both an antibiotic and a steroid. Ty instructed us to put this on Peggy's lower eye lids every 2 hours. She sugested placing a very small amount of the oinment on a Q-tip and rolling the oinment into her eye or on her eyelid. She even said taht we could use the Q-tip to gently dry up or suck up any excess tears in teh bottom of her eye before putting in the ointment so that it would stay in. She also recommends that we use this method when using the PM refresh gel so that we can minimize how much we are using. It is OK to use the PM gel with the TobraDex, however, it is best to wait approximately 30 minutes after you put in the TobraDex before putting Refresh in.

Ty called in a prescription for the new ointment (it should be covered by Peggy's insurance which is a good thing since it is around $40 for a tiny tube). Ty also is calling in a prescription for Restasis. She is not sure if the Restasis drops will work for Peggy since the way they work is to increase your own tear production - she does not think that this is Peggy's problem, but thought it couldn't hurt to give it a try. She also agreed with a suggestion from Betsy's sister which is to tape just one of her eyes every night - alternating eyes. Understandably, Peggy doesn't like the idea of taping her eyes shut since she wants to be sure she can let the nurses know when she is awake. Taping just one eye a night however, would allow at least one eye to rest and heal each night.

Today Peggy's eyes look great and her eye movement seems back to normal. I have gotten reports from the past 2 days that Peggy's eye movement was very slow and she was having trouble tracking and keeping her eyes open. I talked with Peggy about this and she agrees that a big part of the eyelid and tracking problem was probably - surprise, surprise - FATIGUE!!! Peggy had little sleep Sunday night. Last night she says she slept better than she has in weeks and today her eyes are working great - think there might be a correlation there, Peg? :)

Another theory that Peggy and Ty have regarding Peggy's eyelid heaviness is that her upper eyelids are inflamed, making them hard for Peggy to lift. Peggy thinks that dust sticks to the PM gel and irriates her eyes/causes inflammation in her lids. Ty will be coming by to check on Peggy again tonight. Thank you so much, Ty - you are the BEST!!!

The only other real issue that we discussed during the Doc visit was Peggy's toe. Her podiatry appointment went well yesterday (after a little "comedy of errors" getting her to the right Dr. Morris's office). He removed a small portion of the infected skin and toenail and that it should clear up in a few days. He said that the toenail portion digging into the skin is liek a splinter and is causing the area to become reddened and infected. Dr. Davis has Peggy on a new antibiotic for the MRSA. Please remember to continue to wear gloves at all times when caring for Peggy. Dr. Morris gave us some instructions on cleaning the toe - the Healthcare Alternatives staff will be taking care of this 2x a day.

A few med updates – Dr. Davis has increased Peggy's citrucel to 2 tbsp 2x a day. and Ibuprofen to 2 tabs 3x a day. Peggy reported no problems with the trach this week.

Peggy did want Dr. Davis to know that she has a lot of fear regarding her eyes. Peggy was very anxious and upset the past few days and was terrified that she was losing her ocular movement. However, Peggy said that her mood today is great. I'm sure the good night's sleep last night helped her feel better all around.

So that's the latest. Hope you like Hanna and Peggy's latest costume creation for Dr. D - they call it "Feeling Crabby". Ha!

Peggy's Eyes

Peggy has been having some trouble with her eyes yesterday and today. It seems that she was having a hard time keeping her lids open last night with Eric the night nurse, which scared her. She did not sleep well since she was worried that she would not be able to let him know that she was awake. Today her eyes are irritated and it is very difficult to spell with her. She is understandly very scared and concerned about this - her anxiety level is very high. It is not clear if this is progression of the ALS affecting just her lids or if there is some loss of ocular movement. It is more likely that Peggy's fatigue is affecting the speed of her eye movement. We'll know more tomorrow when Dr. Davis does his weekly eye exam. Cory and Dr. Davis are aware of this issue and we will be addressing everything tomorrow in Dr. Davis's visit.

Peggy is heading out to her podiatrist appointment this afternoon. Hopefully she will be able to get some rest later. She was up in the wheelchair Friday, Sunday, and will be up in it again today for her trip to the doc.

IMPORTANT message from Dr. Davis: MRSA Infection

Dr. Davis and Cory wanted us to post an important message about Peggy's toe infection. The type of staph that Peggy has in her toe is called MRSA which stands for Methicillin-resistant Staphylococcus aureus. This is a specific strain of the Staph bacterium that has developed antibiotic resistance to all penicillins. Peggy is on an antibiotic that will be more effective in treating it now, but we also need to take precautions to keep all of YOU from contracting MRSA. Here is what we can do:

1 - Please remember to wear gloves at all times when handling Peggy's toe as well as when suctioning and handling any other bodily fluids. When in doubt - wear gloves! Also wash hands frequently and thoroughly.

2 - Change Peggy's clothing and bedding regularly and DISINFECT everything in the room regularly. Wipe down the surfaces with the lysol wipes often. Alcohol has proven to be an effective topical sanitizer against MRSA

3 - If you have any open cuts, skin lesions or conditions, etc. you could be at a higher risk - so please cover up well with bandages. If you have questions about your risk level, please talk to us. As much as we hate to say this, high risk folks may need to get off the schedule until this is resolved.

4 - If you have an infection that seems to not be responding to antibiotics, you should tell your doctor that you may have been exposed to MRSA.

Please understand that most likely no one brought this in to the house. Peggy contracted MRSA when she was in the hospital a few years ago which means that this very likely was lying dormant in her body until now. Furthermore, Staphylococcus are ubiquitous in the environment. In addition, approximately 30% of healthy adults carry Staphylococcus aureus on their skin or in their anterior nares at any given time.

If you have any more questions or concerns about this, please come talk to me. It is not out intention to freak anyone out about this - we just want to make sure we take the proper precautions to keep you all healthy and get Peggy's toe looking purty again.

Nose Painting with Indy, Flat Tire, and Staph in da Toe

Today Indy came with me and Sawyer to Peggy's. Peggy and Marvel nosepainted - this time Indy got to paint Peggy's nose! It's not every kid that gets to paint her Puna's nose. Then Indy got to do a little painting too.

Peggy's tire was completely flat. Not sure what happened with it, but we got Pete from Ace Medical to come out this evening and fix it. He was able to inflate it and says that he doesn't think there is a leak, but that we should a keep an eye on it this weekend. Especially since Peggy needs it for Monday's doc visit! Peggy asked Pete about getting a neck brace - he's going to do some research on it and get back to us.

The culture came back from Peggy's toe and it turns out that she has a localized staph infection in her toe. Dr. Davis is putting her on new antibiotics that will work on the staph.

Kathleen Norris, Book Deal, Oceanic, Trach, and Business Stuff

Yesterday, Peg's Leg Marita Biven came by with Peggy's favorite poet, Kathleen Norris, for a visit! Peggy was thrilled! It turned out to be a very "literary" day...Peggy later had a meeting with Roger, the agent helping with Shelly and Peggy's book. They have found a publisher who is very interested in the book, however would like to publish it as an adult picture book first, rather than a children's book. Peggy has 2 other children's books she has written that she wants to publish down the line, but first we have all decided to focus on the adult book that Shelly and her have completed. Roger thinks that if we move now, there is a good possibility that the adult book could be out by Christmas! Wow!

I got Oceanic to come out and fix our internet today. They did all kinds of rewiring and rerouting, so we shouldn't have any more problems with the connectivity dropping off. Since Dr. Davis had us move up to "business class" to handle the tele-med stuff, their tech service is so great! Non-commercial tech service can take weeks - they came just a couple hours after I called! Love it!

Peggy's trach bleeding was better today, but she was experiencing some discomfort. FYI - she had Marvel add 1 cc of air into the cuff at 2pm.

Marvel and Peggy have been working on nose paintings. Peggy is doing a Thanksgiving themed nosepainting that was commissioned by the ALS Association. They want to use it for their company Thanksgiving/Fall greeting card. They are also doing greeting cards with 4 of her images - a right hand, left hand, teeth, and eye - that will be sold on their website.

Also - more good news - Pacific Island Art just sent us the Peggy Chun Calendar for 2008! They look great and will be available mid-year for $12 through us and in stores. Hooray - We have Peggy Chun calendars again!

Trach, Toe Culture, and Lost Tonight!!!

Peggy's trach sponges were very bloody this afternoon. Peggy and Cathy think that it is just from the trach moving around a lot today. Marvel put lidocaine since it is hurting more than usual. Cathy came and took the culture of Peggy's toe. We should have results within 3 days. Don't miss LOST tonight!

Doctor Visit

It's Doctor Visit day again with Dr. D and Cathy. Check out Hanna and Peggy's latest costume creation - "Mardi Gras Volcano". Here's the scoop:

Ears - Peggy has had no pain. We're scheduling a doc appointment soon. We're taking care of the podiatry appt. first.

Eyes - Peg's been getting more sleep since she's been using the goggle/sleep mask combo. She needs the right mix of PM and Refresh Gel. She says her eye tiredness depends on how much she has gotten.

Mouth - She says the Oasis spray has been working. Doc gave the OK to take more if it is working.

Trach - Peggy has had very little bleeding around the trach in the last 24 hours. Her sats were 98-99% off oxygen today!

Toe - Peg's toe is still swollen and now it seems to be on both sides of the nail. Dr. Davis asked Cathy to take a culture of the toe since we've been treating it for 3 weeks now and it doesn't seem to be responding to the Cephalexin. She will take the culture tomorrow morning. Peggy has a podiatry appt. scheduled for next Monday at 1:30.

Other - Dr. Davis will be looking into getting Peggy another Botox shot for saliva reduction. He will also write a prescription for a head rest for Peggy's wheelchair. Peggy's been wanting a head rest for her wheelchair for a long time. We'll be working on this. Dr. D also recommended adding 1 Tbsp. 2x/day in liquid to help Peggy get things moving.

Mood - Peggy told Dr. D and Cathy, "My mood is fine. I'm very busy with art projects and driving everyone crazy." No question about that! Actually, Peggy was truly in great spirits today. She spelled out tons of "Perfect"s and "OK"s - always so great to spell out those words.

Last but not least - HAPPY BIRTHDAY TO PEG'S LEG KAY HOFFMAN!!! We love ya, Kay!

A Visit from Immaculee

Yesterday, Peggy had a very special visitor. Thanks to the hard work of some special Peg's Legs angels (Shelly Mecum, Andy Yim, and Valerie Santiago), Immaculee Ilibagiza, Rwandan author and motivational speaker, made a stop off on her whirlwind visit to the island to meet Peggy. Immaculee wrote the book, Left to Tell: Discovering God Amidst the Rwandan Holocaust, which is an autobiographical work detailing how she survived during the Rwandan Genocide. Visit her website at www.lefttotell.com to read more about her and her amazing story of survival and forgiveness.

Immaculee has the most stunning presence. Her gentle spirit and radiating beauty have a quieting effect on people when she enters a room. She spoke quietly with Peggy at her bedside. They spoke of courage and faith. Immaculee and Priest John gave Peggy a blessing before they left. Peggy made sure they left with lots of prints - Mother Marianne, Kalaupapa, Madonna and Child, Molokai, and Eye Heart You. It was a very emotional and magical visit.

My favorite thing that Immaculee told Peggy was this - she said, "Your message to others is that if God gives you a gift, you hold on to it no matter what." Isn't that so true. Peggy has this amazing gift to paint and create. This illness has tried to take that from her again and again, but Peggy holds on to it. She has never taken that gift for granted but instead honors it by continuing to create even against all odds.

There is so much to say about Immaculee, so be sure to ask Peggy all about it. Thank you to all of you who helped create yet another miracle in the Chun home. Peggy's true gift from God is that she is an ANGEL MAGNET!!! She pulls the planet's most amazing caregivers, friends, and visitors to her bedside everyday. What a gift.

Downtown Chinatown Chronicle

We stopped by Peggy's yesterday afternoon to pick up Elroy and go down to Chinatown for Chinese New Year. We had to show off the kids' outfits that Elroy had got them!

A few things...We've had a few scheduling mix-ups over the past few days. We want to send out a BIG BIG BIG thank you to all of you who helped us cover the shifts. Just a few reminders and requests that will make the scheduling go as smoothly as possible and help our scheduling ANGEL Suzanne with her tough job:

1 - I will do a better job of trying to have an accurate calendar posted in Peggy's room. However, NEVER assume that the calendar in her room is the most recent and most accurate! If you have a question - ALWAYS check with Suzanne to confirm.

2 - It always helps Suzanne to hear back from you - if possible, even if you CAN'T take a shift, please take a moment to call her back just to let her know...she rather hear a "no" from you than not hear from you at all!

3 - If you have an important scheduling issue for Suzanne - leave a message on BOTH her cell phone and her home phone to be sure she gets it with enough time to handle the situation. And remember, Suzanne is only human, so checking to be sure that she got an email and/or confirming schedule changes doesn't hurt and can definitely help!

Thanks Everyone! A few other notes...the internet has been acting funky at the house lately. It has been very temperamental and so may not always be working in Peggy's room until we have a chance to figure out what the problem is. We're working on it.

Another reminder - PLEASE DO NOT LEAVE MIXED MEDS and/or DIRTY SYRINGES for the next shift! Be sure to administer any meds or let the next shift know what you have mixed and needs to be given to Peggy. Also, once you give her the meds, rinse the syringes right away so that they don't get crusty and clogged. This will help us to save money by not wasting meds or syringes. Mahalo!

Kung Hee Fat Choy!

Happy Chinese New Year everyone! Here's some notes from the past few days:

Cory came by Friday to look at Peggy's trach. Someone had taken the blue cap off the end of the balloon and replaced it with tape. She has put a new one on. PLEASE DO NOT take the blue cap off the end. You do not need to take it off to put air in and out of the trach - BUT NO ONE EXCEPT THOSE WHO ARE TRAINED TO should be taking air in or out and manipulating the cuff. If Peggy feels like the trach is leaking - you can check to see if the blue cap is screwed on tight enough, but don't take it off.

The gurgling at Peggy's neck does not necessarily mean that her trach is leaking. Peggy has "tracheal malasia" which means that there is a loss of integrity of the muscle surrounding the trach (inside her throat as well as around the trach site) - this will mean that no matter what it will always be somewhat positional to avoid that gurgling noise. If Peggy is gurgling but the balloon is taut and firm then it is most likely positional. Now, that being said, if she is gurgling and the balloon is soft and pillowy then this could indeed indicate a leak.

It is important to note that manipulating the cuff repeatedly and/or putting too much air in the cuff could cause problems down the line. Adding more air is not a quick fix solution to the problem of gurgling. Unfortunately, tracheal malasia is just part of the problem for long term trach patients. This is not to say that we should disregard Peggy's concerns about the gurgling or leaking - we need to address these issues with sensitivity and understanding so that we can help Peggy to be comfortable and have peace of mind.

Peggy wanted to me to add a couple reminders to the blog. First she says, "Please don't cover my right ear because I'm totally deaf in my left". This is, as we mentioned before, because her eustation tube has closed on that side due to lack of use of her jaw. She'll be going to the ear doc soon to have a stint put in to open it back up.

She also says, "During the day, put only a small drop of the Refresh Liguigel at a time. Follow it up with an 'up-blink'." If you don't know what an "up-blink" is, have someone show you this blink technique where you blink her by pushing from under her eyes.

Peggy would also like to request that her arms and legs be moved more often. We know its hard to get everything done in a shift and remember everything, so Peg agreed that she will try to remind us when she needs movement.

Peg's Toe, Teeth, Trach, The Mosaic, and Pat's Artichoke Dip!

Sawyer is taking over the blogging for me...just kidding. Here he is "working hard" in Puna's room.

So...Tuesday afternoon Cory came back with meds for Peggy. She is on another antibiotic for her toe which is still looking inflamed. She is on 10 ml of Cephalexin every 6 hours at 4am, 10am, 4pm, 10pm. Cory did drain some of the pus out of the toe (sorry to all you with weak stomachs!). Cory recommends leaving Peggy's sock off so that it can heal. I have scheduled a podiatrist appointment for Monday Feb 26 at 1:30pm.

By the way - here is Betsy's mother's remedy for ingrown toenails: Put a very small piece of cotton or dampen a small piece of toilet paper and tuck it under the nail with a tweezer or the like. It relieves some of the pressure and pain and keeps nail from growing into skin.

Ed and Rita Cassella stopped by again recently to photograph Peggy's teeth. Dr. Cassella would like to present Peggy's case if given the opportunity at a Medically Fragile Conference at Queen's. His concern is the "supra eruption of her second molars that will prevent her teeth from occluding top to bottom. This in turn results in shifting and malignment." Peggy, by the way, loved the sensation of the "mouth stretchers" that Ed used to pull open her mouth so he could photo her teeth. He was so kind and gave them to her so she can use them to stretch out her mouth once in a while! Thanks Ed!

Peggy has been complaining of trach problems this week. She has been saying that it is "leaking". She says that it is leaking "2 CCs every 2 days." It was gurgling today and Peggy felt uncomfortable. We have a call in to Cory. The vent has not been alarming. Lolo was able to get Peggy comfortable and stop the gurgling by adjusting the position of the trach.

Today was a crazy day. Peggy is entering her mosaic called "Beginnings" (the sunflower-like one) in the Hawaii Watercolor Society show. I did not realize until yesterday that a slide of the piece is due on Saturday. We spent all day getting the slide film, getting a camera, photographing the mosaic and some nose paintings, and then getting the film delivered for 24 hour processing. Ugh. I want to say a big thank you to Marvel for helping Peggy until almost midnight last night fixing up the mosaic. I also want to thank Kelly for helping this morning with phone calls and going with me to "PhotoPlant", Tiare for her camera, Harinani for her help fixing up the mosaic and helping me photograph, and Andy, Suzanne Ching, and Lolo for all their help with Sawyer!!! You guys are all so amazing! What a day!

Yesterday's Valentine's Party was great. The house looked so great thanks to Karen's stellar decorating. The food was yummy - of course the highlight was Kelly's penis cake. What's valentine's day without one, right? Unfortunately, we were all so full of Pat Gamble's artichoke dip that we barely touched the sweets. Here is Pat's recipe:

1 can artichoke hearts (chopped)
1 can green chiles (chopped)
1 cup mayonnaise
1 cup parmesan cheese
a handful of green onions (chopped)

Mix all together and bake at 350 degrees for about 30 minutes. Serve with crackers or pita chips. Yummo!

OK, that's it for now!

Goggle/Sleep Mask Solution, Communication, and the Blog

Quite a bit transpired over the weekend since our last blog entry. I'll do my best to sum up the most important issues.

PEGGY'S EYES: As we've mentioned, we've really been trying to manage the fairly new issue of Peggy's eyelids "popping open" when she is sleeping. Everyone has been trying to work on a solution for naps and overnight sleeping - the challenge is trying to find a comfortable and safe way to protect Peggy's eyes and keep the light out - BUT in a way that you can tell if she wakes up and needs your attention. After a lot of trial and error, Eric the night nurse and Peggy seem to have come up with a solution. You place the clear goggles on Peggy's face. Then you place the black "sleep mask" over the goggles, but shift it to the side so that you can still see the corner of her left eye. I will attach a photo to this blog tomorrow to show everyone. Peggy said this worked very well for her last night.

COMMUNICATION: Cory was at the house today for over 4 hours. We had to sort out a few issues that came up over the weekend. We have worked everything out and don't need to go into all the details since we've cleared most of them up, however, a few very important points were made.

First of all, we talked with Peggy about the importance of clear communication. Obviously, there is going to be a lot "lost in translation" with the spell board. It is important that we take the time to be sure we understand what Peggy is saying and that we have the whole picture. It is equally important that Peggy carefully choose the language she uses and HOW she relays information. For example, dramatic language will put most people on "high alert". Furthermore, prefacing her concerns with simple statements such as, "I'm OK now, but..." or "I don't need you to do anything about this, I'm just venting..." or "I need assistance coming up with a solution for..." will help to clarify where she is coming from at the start of her spelling and help others be able to receive what she has to say from a better place. We all know that keeping Peggy comfortable and safe is our number one concern, but we need to be able to distinguish crisis from non-crisis or else we'll all burn out.

SUPPLIES: While Cory was at the house, she sorted through ALL of Peggy's supplies, closets, etc. and organzied EVERYTHING. She found boxes of unpacked supplies sitting in the hallway and found tons of things that we thought we were out of. She carefully inventoried and sorted everything, put them in ziplock bags, and labeled each bag. Please work to keep everything neat and organized. We also need to work on a system for receiving supplies that are delivered to the house. I'm open to any ideas on this one.

BLOG: I've gotten some great feedback on this blog. I'm so glad you all are finding it informative, interesting, etc. I'm loving it! If you have the time after or during your shift, please take the time to drop me an email or write me a note with anything you think is "blog-worthy"! Some of you have been doing this and it helps me tremendously!!! Thank you!

PS: Sawyer was showing off his new G.I. Joe crawling skills for Peggy today! Uh oh...he's officially mobile!

PPS: Don't forget - Happy Valentine's tomorrow! Join us for lunch if you can.

Peg's Visit to Queen's

OK, perhaps we were a little ambitious thinking that Peggy would get to 3 doctor appointments in one day. Marvel did an excellent job of getting Peggy to the ER for her trach change on time. What we did not anticipate was the fact that Queen's ER would be so full that they had would have no room for Peggy do get her procedure done. So Peggy, Marvel, Betsy, and Cathy waited until 1:00 to get a room. Then because they were off schedule, they had to wait for Dr. Druger to be available. He finally did the procedure at 2:00 which only took about 30 minutes. However, Peggy also got a chest x-ray and that took forever since the ER doc wouldn't release them until he reviewed the x-rays. Her x-rays were just as Dr. Davis had predicted - there was a little bit of normal congestion, but nothing to worry about.

Peggy will be rescheduling her podiatrist and ear doc. She was actually relieved that she didn't have time since the pain of the trach change was so severe. She has decided that it is not a good idea to schedule anything on the same day as a trach change. She is feeling sore, but she's feeling well enough to be chatting with us about how cute and handsome Dr. Druger is and how she enjoys his bedside manner :)

Tonight Kelly is on shift. Eric and myself are here with Indy and Sawyer and Jason is here with Jade. We're having pizza and just hanging out while the girls go bananas around the house.

VALENTINE'S DAY LUNCH!!!

Come by on next week Wednesday on Valentine's Day! We'll be having a little potluck lunch to celebrate Valentine's around noon with whomever is at the house. We're thinking Valentine's themed dishes...red foods, artichoke hearts, hearts of palm, aphrodisiacs? How creative are you guys?

Congestion, Dr. Davis Visit, Electrician Update

Another busy day. Peggy was complaining that she felt like she has "a serious mucus plug or pnuemonia." I called Denise and she had us take Peggy off oxygen and monitor her "sats" for 20 minutes. We took her "pulse-ox" every 5 minutes for a half hour off oxygen and she steadily declined from 100 to 94. We put her back on oxygen. Denise told us to percuss as much as we could - preferably ever hour to try to knock the plug out. Peggy was feeling like she might want to go to the ER, but Denise did NOT recommend that or feel that it was necessary.

Both Cathy and Dr. Davis came by, so they both checked on Peggy. Dr. Davis's visit was a great relief to Peggy. He checked her lungs and said that they sounded fine. He told her that she really didn't need to worry unless we started to see her O2 drop to anything around or below 90. But since she is already scheduled for a chest x-ray on Friday, he said not to worry.

While he was at the house, he also did a full check. He checked her ears and confirmed that the left "stint" propping her eustation tube open had indeed fallen out causing her loss of hearing on that side. Peggy says it has been that way since around Thanksgiving. Dr. Peroff will re-prop it open on Friday. The last time Peggy had this done she said that once it was opened up again it felt like everyone was SHOUTING!

Peggy told Dr. Davis that this week she has felt as if she can't handle the pain she is feeling. She says that the pain is mostly trach related, congestion, and lately "headache pain above the left eye". Dr. Davis felt that the first 2 issues will be handled on Friday. He thinks that the headache pain may be sinus pain. He upped her sudafed to 4x a day for 5 days to see if that will help. Peggy said that the pain has been depressing her this week, but that while she is still feeling pain, she feels better today.

On a positive note, Peggy's eyes were in excellent condition today. They were clear as day and darting around. It was great. Dr. D did an eye exam and said her eyes look good.

Dr. Davis also fixed our internet when he was at the house! Yay! He also moved the router to a higher position (in the back office by the bathroom). Be careful because until I get a longer ethernet cord, it's pulled a little too tight for how long it is, so don't trip on it!

Dr. Davis took the time to show us and show Peggy on his laptop what he sees when he looks at her from her office using the telemed camera. Peggy got a kick out of seeing how it all works. It is so amazing. He can see so much detail and can zoom in and all around. Very cool.

Today the electricians came back to put in the "ground". Then they checked the outlet where we have the battery charger plugged in and they confirmed that we should have no problems now. I can't wait to report back to Respiratory tomorrow.

Since the electricians were working on the fuse boxes, we put Peggy on the generator/battery just to be safe in case the power went out. It was a great test of our back up system. The generator worked great and so did the battery. Hooray.

Dr. Visit, 3 Doc Appts on Friday, Nose and Brain Painting

Tuesdays are always so BUSY here in Chun Land. Here's the update - brace yourself, this is a long one:

DOCTOR VISIT - Peggy had her Tuesday doc visit however we couldn't get the internet/telemed connection going. Dr. Davis is going to bring a new router here and try to fix things tonight. He'll also check out Peggy's ears when he comes by. Peggy wrote down her issues and so Cathy just told him everything over the phone. Here's what Peggy had written out with Marvel yesterday:

"I'm worried about noise and leaking in trach. Cuff seems to be having difficulty staying secure. It causes pain when this happens. It causes the cannula to press against the side of throat which in turn results in ear and back pain.

The problem of the prescription for PM Gel has not been resolved. Ty is leaving again next week. She was going to research the many manufacturers.

Foot is better and placement of ankles has worked.

Eye function is dependent on amounts of PM Gel and Refresh Gel and blinking received. Eyes getting tired more often.

Congestion that is always there is getting worse. I would like to schedule a podiatrist and Dr. Peroff (ear doc) preferably same day as trach change. I am requesting that Dr. Druger use real pain killers this time (instead of Lidocaine which is a joke).

Can I get the Botox again (for saliva reduction)."

Dr. Davis responded by saying that he will talk to Dr. Kimata regarding the Botox. He will also talk to Dr. Druger about having a chest x-ray done on Friday. Peggy has 3 appointments scheduled for this Friday. We have scheduled a trach change at 11am in the Queen's ER. Then she will be seeing her ear doc at 12:30 in POB 1. Then she will she a podiatrist at 1:30 in POB 2. Marvel will be taking her and we're working on the Bs. Cathy will be meeting them down there.

It is such a shame that Dr. Davis couldn't see Peggy today - Hanna had her looking oh-so-marvelous! Very Mardi Gras. See attached photo.

BATTERY/ELECTRICIAN UPDATE: Al Sim the Electrician came on Friday. He had HECO come and did a lot of complicated stuff. Basically he told us that we need a grounder (?) put in since we don't have of our own and it's critical if HECO's gives out. It wasn't clear if he thought that this was causing a problem with the charger - but at least we'll get this done and we can tell Respiratory that we have done it. He's coming back tomorrow to work on this. More on this later.

BRAIN PAINTING: Peggy had a "Brain Painting Party" on Friday night with the gang from Archinoetics. They came by with their equipment and pizza and hung out with Peggy while she painted with her Brain Waves! She had a great time.

DR.CASSELLA VISIT: Peggy's Dentist Ed Cassella and his wife Rita came by on Saturday. Ed thought Peggy's teeth and gums looked healthy, but her lower second molars (#18 and #31 for those of you who know teeth) have extruded and are not permitting all her teeth forward of them to come into contact with each other. He thinks a soft rubber mouth guard from a sports shop may help her comfort level. He wants to come back and photograph the molars for a seminar he's attendingHe also gave us a new mouth rinse, just like the old prescription one we were getting at Long's but without alcohol in it, because alcohol tends to dry out the mouth. Thanks so much Ed and Rita!!!

NOSE PAINTINGS AT PUNAHOU AND THE NEWS: Peggy sold 2 Nose Paintings at Punahou Carnival! Yay! She sold "Jungle Tumble" and "Early Snowfall". Peggy was on the KHNL at 10pm on Saturday - did anyone see it? I personally didn't see it but Peggy says that she called KHNL yesterday and they said they will put together a DVD for us this week - cool! Peggy's been doing more nose paintings - she painted Sunday with Marvel. Harinani also came by on Sunday and helped Peggy work on her mosaic called "Beginnings" - she is making some changes to it.

BATH AID/CAREGIVER RECRUITING: I am looking to hire someone to come in Monday through Friday 8am to 11am to help with Peggy's bath. The pay is $10/hour. I have had no luck yet and 2 no-show interviewees. Anyone interested or know anyone? Please spread the word.

News Update and Pen Bouquet How-To

Well, I guess Baseball and HECO's power problems bumped Peggy's nose painting story. That's so wrong. Anyways, check the KFIVE and KHNL news again tonight. Keep your fingers crossed!

Many of you have seen the beautiful pen bouquet that Shelly Bellman gave Peggy and the caregivers. Yesterday Shelly and her friend Judy gave us instructions on how to make one!

They said the cheapest place to go for the supplies is Walmart, but Floradec also carries everything you need.

Materials:

Black ball point pens
Green florist tape
Vase (squat with a wide mouth, but tall enough so they don't fall out)
Clear or colored marbles (also in the florist section)
Plastic flowers (be sure to the get the type with leaves that move so that you can push the leaves up high - get a variety of flowers if you want a bouquet-like look, you can also get flowers with multiple sprigs and cut many from one)
Wire cutters (scissors won't be strong enough to cut the flowers)

Once you have all the things you need, its pretty simple. Just take a flower stem, push all the leaves and stuff up to the top. Line up the stem with the pen and cut it to the size of the pen. Take the green tape and start wrapping from the butt end of the pen down to the tip. Then just fill the vase with the marbles and place the pens in the vase.

These aren't the best directions, but just come by and take a look at the pen bouquet in person - you'll see it's actually pretty simple. Thanks Shelly and Judy! What a great gift! These would make such cute party favors/centerpieces, thank you gifts, etc. Have fun!

PEGGY ON THE NEWS TONIGHT!!! (Hopefully)

Watch Channel 5 (KFIVE) at 9pm AND Channel 8 (KHNL). They are pretty sure Peggy's story will run tonight unless more pressing news develops...

Battery Drama, Spellboarding, Trach Stuff

Are you sick of hearing about our battery problems yet? Here goes - last night Marvel reported that the battery had been on the charger for over 24 hours. She took it off to test it and the vent said that there was no external power, meaning the battery was dead. Hanna and I verified this today. The other battery seems to have some charge left.

I spoke with Cory about this last night and she gave a call in to Respiratory. They called back last night, however, they called on the office phone and not Peggy's line. So I spoke with Nancy from Respiratory today. She basically is stumped and told us to call an electrician because she says that it must be our house - she thinks that possibly the house is surging and therefore affecting the battery/charger. I told her I would go ahead and call one so that we can find out once and for all if it truly is our house.

Debbie from Respiratory brought us a fully charged battery for back up and took the one that we said was dead. Well, that's all good, but as soon as she left we tested her fully charged one and the vent said "no external power". Argh. So basically what this tells us is that it is the BLACK CASE that is the problem. I let Debbie know. So now here is what we have - one partially charged battery in a good black case and one fully charged battery in a BAD CASE. Please DO NOT PUT EITHER BATTERY ON THE CHARGER since it seems that maybe the battery charger might be the problem.

So anyways, I called 2 electricians and they basically told me the same thing. They both said that it is most likely not a problem with power surging or the wiring since we would see problems elsewhere in the house (as in flickering lights, problems with other equipment such as computers, or tripping of the breakers/fuse box). They both say that it sounds like it is a problem with the charger. I have one of the electricians coming in tomorrow morning to take a look at the charger, battery, and our outlets.

He told me another interesting thing. Respiratory has always told us that we can't plug the vent directly into the generator because it will damage the vent - the electrician said that there is no way that is correct and there should be no reason that we can't plug the vent into the generator.

When Debbie came I asked her about plugging the vent into the generator and she told us that we can't plug it in to it since generators don't have a steady stream of power and the surging could fry the vent. I think I will call the vent manufacturer to see what they have to say.

As for other issues...Peggy had a rough night last night. She had a mild fever around 1am (probably due to the toe infection), so Michelle gave her Tylenol which broke the fever. Peggy woke up sweating about an hour later. Michelle changed all her sheets and got her cleaned up, but she was uncomfortable with burning eyes and trach issues the rest of the night.

Reminder for all caregivers - Peg's Legs and Healthcare Alternatives Staff - we need to remember to check in with Peggy regularly with the spellboard. Peggy told us today that there are times when she feels frustrated because she will be in pain and people may not notice or use the spellboard to figure out what is going on. I spoke with Cory about this and she will be addressing it with her staff.

Regarding Peggy's recent trach pain - Cathy checked out her trach/cuff yesterday and said that it looked OK. We have the new Inner Cannula (Shiley #8) on the shelf ready for Friday when they do her inner cannula change. Hopefully this will resolve much of the issue, because if Peggy continues to have problems that can't be resolved, she will need to go to the hospital for an actual trach change which is quite painful and traumatic to the trach site. Plus you know how Peggy hates hospitals!

By the way - Eric bought the non-skid stuff for the ramp but I forgot it at home today. Hopefully I'll get it put on the ramp tomorrow when I'm here to meet the electrician in the morning. Then we're taking Indy and Sawyer to Punhaou Carnival!

So, we're getting Peggy ready for her KHNL interview now. Sawyer is finally sleeping - he's been a crabby little guy today - we think he is teething since he's drooling, has a little runny nose, and is much fussier than usual. We'll let you know how the interview goes!