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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

Episode 18: All That Yas

Episode 18 : “All That Yas” — Yasmine Ould Slimane held a silent art auction to help benefit Tim’s quality of life care.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

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

Episode17: Band Together

Episode 17 : “Band Together” — Tim and Kaylan return from their honeymoon to an Often Awesome benefit concert to help with Tim’s quality of life care.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

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

Episode 16 : Walk This Way

Episode 16 : “Walk This Way” — Greensboro hosts “Walk to Defeat ALS”, while Tim and Kaylan are in Scotland enjoying their honeymoon.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

Episode 15 : Across the Pond

Episode 15 : Across the Pond — Tim’s friends from Scotland reminisce about Tim’s impact in their lives.

Often Awesome The Series is a web series about Tim and Kaylan’s battle with ALS. Its a story about love, friends, strength and courage. Join us every two weeks for a new chapter in this amazing adventure.

For more information on Often Awesome The Series Click Here

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

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