lis's blog

Tuesday News

Hello lovelies!

I know many of you are worried about our Timothy and I wanted to put out a word, even though there isn't much to update you on. I'm sorry if I'm getting repetitive!

Tim has received the official word that he does have MRSA pneumonia. He is, of course, overwhelmed and scared but he is also incredibly appreciative of his amazing army.

He won't be going home for at least a few more days so he asked that someone get him a copy of this week's True Blood. He doesn't need a disc, a data file will do the trick. Just because he's stuck at the hospital doesn't mean he doesn't need the scoop on what's going on with Sookie!

Thank you guys a thousand times for being patient with me if I haven't responded to you yet or haven't answered your questions. If there is something specific you'd like to know, feel free to email me. I can't promise that I'll answer you individually but I will try my best to include answers in the updates.

If you would prefer to read updates via blog rather than facebook, we are reposting all of these messages on www.oftenawesome.org. Links to all blog entries are on the right hand of the website.

all my love,
lis

More News and A Request for HELP!

Ok, army, Bring on the good vibes. Tim was officially diagnosed with Staphylococcus Aureus Pneumonia (which may or may not have drug resistance, i.e. MRSA) today. He also had another mucous plug that took about 45 minutes to break up before he was able to breathe normally again. I can't even begin to explain to you how scary that is for him.

Tim wanted me to tell you guys that he loves you. He also wanted me to tell you that this is a big deal and he's overwhelmed but that he's a fighter and it is the love coming from all of us that gives him the will to fight. He needs lots of affection right now.

His main gripe: The hospital has blocked access to netflix and facebook and that's really pissing him off. He wanted me to ask if anyone had either a netbook with 3g service or one of those USB thingies that allows for 3g internet access. He said that he would happily reimburse anyone for the cost or the time lost. But the hospital is friggin boring and Tim deserves to have the things that make him happy, right?

Thank you to everyone that has messaged me about visiting. I've got class this evening but am plugging through the messages and will get back to you pronto, I promise! If you sent a sweet message but no offer to volunteer, I will still get back to you but will probably do it after I message everyone else. Holy crap, you people are amazing, by the way.

love x 1000,
lis

Timmy

I just got a message that Tim is being moved to a step-down ICU, which is good news! I have no idea how long he'll be in the hospital, but I'm still trying to coordinate round the clock care for the week, just in case.

We have a couple of people doing overnight shifts but I'm trying not to drain those resources too much. We have had people stay for 12 hours overnight and people break it up into 3 or 4 hour shifts. Tim is okay with people falling asleep during this shift, as long as they aren't heavy sleepers.

We are also trying to get coverage for mornings to 3pm (a lot of people work during this time so it's harder to get coverage.

If you decide to take a shift, you will have a few responsibilities other than companionship:

*We are trying to limit visitors to no more than 3 people in the room at a time (not including Kaylan).
* If you are listed as being the volunteer for a shift, it is your responsibility to adhere to 3 person limit and to monitor room volume, sanitation procedures, etc...
* Check Tim's phone at least every 30 minutes to coordinate volunteers and read Tim messages.
* You are Tim's proxy. Help him communicate with healthcare professionals and make sure that his non-medical and medical needs are being met.

Tim can't ring the call button or scratch his nose, so you'll be in charge of that kind of thing- but it's really mostly important that you hang out with him, laugh with him and pay attention to him.

When you contact me, let me know the best way to contact you and your time availabilities.

We love you guys so very much and keep the sweet messages coming, even if you can't volunteer. The other night, Tim asked me to log onto facebook and read him some love. After about 5 minutes, he looked content and said, "okay, that's enough for now. I feel full of love."

lis
336.339.9668
info@oftenawesome.org

Correction and Update

Okay a few things:

- I may have been mistaken about the double pneumonia. Apparently, we will find out for sure if it's pneumonia tomorrow morning.

- We do know that he has fluid in his lungs, gunk clogging up his trache, scabs down the back of his throat and has now tested positive for MRSA. (http://www.mayoclinic.com/health/mrsa/DS00735)

- If you were planning on contacting me to schedule a visit, I've been asked to remind you to be cautious about doing so if you have children, are pregnant or immune-compromised. Visitors must wear gowns and gloves and practice vigilant sanitation.

- I mistyped my phone number!! If you want to schedule a visit, please call me at 336.339.9668 (I wrote 0668 before), email at info@oftenawesome.org or facebook me.

love love!
lis

Tim says, "Chill out!"

Excuse any typos and grammar, my lovely army. Moses Cone hospital has facebook blocked so I'm doing this from my phone.

Last night, tim had a pretty big scare. My best understanding- he had some blockage in his airway and his oxygen levels dropped. This happened a few times and emergency procedures were followed. Perhaps because of the use of the ambu bag, tim's left lung began to hurt and the nurse was not hearing any air flow in that lung. An ambulance was called. The xrays showed that he has double pneumonia and he was admitted to the icu. It was clearly caught very early because he had an xray less than a week ago that was clear.

He asked that I tell you to please not flip out. He's scared and uncomfortable but otherwise ok. The icu is a little iffy so please
text him or me about visiting. Right now he is more interested in having round the clock coverage than visitors. He has had some difficulty communicating with the nurses and really shouldn't be alone in the room. If you would like to volunteer, you really don't need any skill or training. I just need you to be attentive, stay awake and do your best to help tim communicate. You can message me on fb, text me (336.339.0668) or email (info@oftenawesome.org). I will keep you fuys updated as things progress.

Much love, lis

Paypal and Caregiving

Hi All!

Paypal:
Can you believe it? We started paypal subscriptions a year ago! For those of you that signed up at the beginning, don't forget to renew your subscription. For those of you that are somewhat new to Often Awesome, please consider signing up to autodraft a small, monthly financial gift that goes directly to Kaylan. The funds are used to help Kaylan and the OA army take care of Tim.

You can check out our donation page at www.oftenawesome.org. We are in the process of revamping the website so check it out either way!

Caregiving:
Since Tim got his trache, our caregiving needs have become a bit more intense. Tim has a nurse for part of each day but we also try to help alleviate Kaylan by providing a few hours of peer caregiving each day as well. Right now, Tim cannot be left alone without a caregiver who has undergone a training in how to care for his trache and vent, as well being willing to help him toilet. While our little care team was perfectly sufficient before the trache, we are stretching our resources a little thin these days and would love to hear from people who are interested in being trained in becoming a caregiver. The training process takes about two hours and can be scheduled for larger groups or individuals can shadow one of Tim's primary nurses during the day. Those who are interested, please email me (info@oftenawesome.org). I have a big week ahead and am backed up on emails so be patient with me!

Love love!
Lis

AN UPDATE FROM TIM

Dear Friends,

I know, I know… I probably should have written a while ago. But for those of you who have an inkling of what’s been going on medically in my life, you can probably understand why I haven’t.

As most of you have either heard or guessed by now, I have undergone a tracheotomy and am now reliant on a ventilator to breathe for me. I am lucky enough that I am still, for the moment, able to speak and eat. But along with this massive life change, there have also been positive changes as well. Kaylan and I have found the most perfect house for us. The layout of the house is the most perfect that we could have asked for considering the condition that we’re in. It even has a back yard for Smuchit, which makes him incredibly happy, which in turn makes us happy. I’ve also been blessed with the nurses from Bayada who have been taking very good care of me at home. Nurses like Lorin and Bill, as far as I’m concerned, have become part of the family already.

And then there are the other changes, which I am slowly coming to terms with. I no longer have any functioning limbs. There is some slight movement in my right arm and leg but neither of which can accomplish anything. While I can still eat real food, instead of pumping cans of medical food into my stomach, I cannot feed myself. I can’t control the tv remote and at this point, I can’t control the remote that helps me move the hospital bed. Even though I can still talk, my voice has changed dramatically. Certain words and phrases are nearly impossible to understand. I even have to wear a microphone that looks like something that Britney Spears would wear in order to be heard. There have been a slew of other medical problems that have followed the procedure. I have an unrelenting yeast infection under my scrotum and on my legs. I have a horrible, itchy case of psoriasis, which I can’t scratch. I am in constant unrelenting pain, particularly in my legs, which have an excruciating combination of neurological and muscular pain. Whoever said ALS is not a painful disease is a fucking idiot. I’ve been catheterized more time than I can count on my hands and this continues to happen still. Going to the bathroom has become an increasingly difficult chore and one in which I have no privacy. In fact, I no longer have any privacy at all. I have to live with the constant knowledge that without having someone around that knows how to operate the vent and who understand my condition fully, I will die. Everything feels like a gamble and although I have such good care around me, sometimes it’s hard not to dwell on that. It can be awfully scary living with this disease at any stage but this has been the hardest so far. I knew it would be.

I told myself three months is what I need to figure out how to rebuild myself into what is now my new body. I knew this would be hard, but I don’t regret for a minute that I did it. And I would encourage all ALS patients, particularly those who have a good support group, to take this step. I don’t find it an artificial means of living at all. I still have my full range of emotion in tact. Because I can get full deep breathes, in a sense I haven’t felt this good in ages. I have no doubts that I can fit my personality within these restrictions. As always, I am trying to dwell on the positive rather than the negative. During this time, there have been so many things that have made me happy (i.e. things that you can do to make me happy). I’m still able to eat food and even though I can’t prepare it, which was a passion of mine, the eating portion is just as enjoyable. I’ve enjoyed seeing so many of my friends and have been overwhelmed by the amount who have trained themselves to take care of me in this position. Although it takes a lot of work, being outside on a sunny day has never meant more. Please remember that although I can no longer hug you or shake your hands or bump fists, that it’s in no way because I don’t want to. When you see me, please hug me, shake my hand, stroke my head- because affection from my friends makes me feel safe. I can’t think of anything I miss more than being able to put my arms around someone, especially Kaylan.

So even if you can’t come over and give me a hug, know that I love you guys and appreciate you. The army has given me strength that I never knew that I had. And because of that, I will continue to do everything that I can to fight this horrible disease and stay alive.

Thank you and I love you all.

Tim

UPDATE ON TIM (FROM LIS)

Darling Often Awesome Soldiers,

This morning, Tim received a voluntary tracheostomy at Moses Cone Hospital. He is in recovery and when he woke up, he made the surgeon say, “It’s a boy!” Typical Tim, maintaining his sense of humor through the pain.

He is not currently able to speak but can communicate via communication board and his eyetracking computer, which he’s getting quite good at. Apparently, they plan on changing the cuff ASAP and will potentially speak even better due to more breath and energy.

I will keep you all updated as things progress!

All my love,

lis

HOUSING, BRINGING THE HOUSE DOWN AND DR. HOUSE.

Oh, you amazing Often Awesome Soldiers. Each day, your love, generosity and support for Tim gives me renewed faith in humanity. In appreciation, here’s the update on our Timothy.
If you only have time to read a little bit, read the first paragraph now and save the rest for later!!
Most importantly, Tim is looking for new digs. He has a wonderful apartment but the space just isn’t appropriate to his needs. He’s looking for a house to rent, preferably with a finished basement or a second floor. Because people are in and out of the house all day, it would be really nice for there to be a space for guests or Kaylan to go that is somewhat separate from the hustle and bustle of Tim’s care. It needs to have either a REALLY big living room or a HUGE master bedroom. Also, large dogs must be allowed. Other than that, it would be nice if it had a fenced in yard but it doesn’t need to be wheelchair accessible as we can always build a ramp. We were thinking about a budget of $800-$850 but we’re willing to be flexible. Tim is housebound most of the time and it’s really important for he and Kaylan that their living space feels like home.
If you have any leads, please post them here: http://www.facebook.com/topic.php?topic=14844&uid=80514396190
A few other things to mention:
- The benefit show was a wonderful success, filled with incredible music, amazing people and fabulous t-shirts and raffle prizes. Michael Sileno really is the Often Awesome Benefit Show Hero. The show was recorded and filmed and I’ll have more info on how you can get your hands on the media at a later date. You can read Tim’s speech from the event here: http://www.facebook.com/profile.php?id=2709544&ref=ts#!/note.php?note_id=393297307333&id=542074685
- Tim’s daily care is coming along quite nicely and we have a fantastic rotation of people that come by daily, weekly or monthly and make sure that Tim’s needs are met. If you have something you’d like to do for Tim and don’t see an available slot on the calender, feel free to message me and we’ll create an event just for you.
- Tim wants to get on Ellen!! We’re going to write a summary of Tim’s story and then have the OA army hit up her website and start rallying for Tim to be on the show. If you have any connections to the Ellen Show, let us know!
- There is a movement to get Hugh Laurie to be the spokesperson for ALS (his mother died of it in 1990). Join the facebook group here: http://www.facebook.com/topic.php?topic=14844&uid=80514396190#!/pages/Hugh-Laurie-for-ALS-Spokesman/114429061932929
- Jonathan Moore has set up an account at Ed McKay’s in Greensboro. Here’s a note from him:
“Hello everybody, I just made a page in the Schools/Non-Profit Trade Credit Book at Ed McKay’s in Greensboro. This is a way for people to donate credit to Often Awesome that Tim and Kaylan can use whenever they need to. Basically the way it works is that anybody can bring items to Ed McKay’s, ask for credit, and ask for it to be donated to Often Awesome. We will put it in the log book to keep a record of it and Tim and Kaylan can come in anytime to use it. Right now it will only be possible to bring stuff to the Greensboro location for this, but in the future, we might be able to get the other stores on board as well. If anybody has any questions, please let me know, and spread the word around so we can start building up some funny money!”
- Nate Hall is opening up a tattoo shop in Greensboro and will soon be having a big grand opening event. Since he was instrumental in starting the whole swallow tattoo movement, let’s all make sure to support the new shop!
I’m sure there is a lot more I should update ya’ll on but I’ve run out of steam! Keep being amazing and don’t forget that it’s your love and support that make this all worthwhile for Tim.
love love love,
lis

DUKE APPOINTMENT

Dearest Army,
Tim had his appointment at Duke today and the news was not good. Since his last appointment a few months ago, his respiratory function has dropped significantly, from 77% to 41%.
The rate of decline came as a shock but it does have it’s benefits- medicaid will now pay for Tim to get a BiPAP and a feeding tube. Tim’s ability to swallow is currently unaffected but the earlier he gets the feeding tube the easier his recovery from the procedure will be.
Last week, Tim told me he was going to have to quit playing music soon. He said to me, “People say that just because I’m a musician, it’s necessarily not my identity. I thought, what am I then? And when I thought about how I really defined myself, I realized that at my core, I am a social creature.”
He went on to remind me that as long as I’ve known him, he’s always preferred for people to come over to his house and hang out while he stayed in his pjs and cooked for everyone. Now people cook for him, but the concept is basically the same.
Now is the time that Tim needs to be around people. Around the clock, Tim needs at least one person around who acts as a “caregiver”- but he also just needs people to come by and hang out. You can always call him or me directly to see if he’s free, but if you want to schedule a weekly, biweekly or monthly hangout date, let me know and I’ll put you on the calendar.
Thank you, Army, for all that you do. Your support means more to Tim than you can imagine.
love,
lis
PS- If you’d like to join our care effort, sign up here:
http://www.lotsahelpinghands.com/c/620280/

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