Needing an update on Josh? This one's a little crazy, but just read it.
My brother finally had a bit of an awesome-ness thing going on lately. He was given a tracheotomy, so he can use the vent through a hole in his neck instead of having that annoying tube in his mouth, because I can relate to that tube thing, IT'S NOT COOL. We are hoping that this will help, or do something, anything? K, Keep reading..
Oh hello, yes it gets better, with the trach in, his mouth is free, and his face, and his head, and his angry at the tube stuck in his face attitude, and since that all sounds like so much fun, you would have to imagine that with all that being gone, how he must feel. I mean I know how he feels, but, just think about it. The perfect comment today, happily said, was by the respiratory therapist who walked in and stated "He looks like a human being with that [vent] thing out!" lol. It helps 190% that he can wear his glasses and mostly that he currently isn't puffed up like the Michelin man. (Although being the stick figure he has always been it wasn't a bad look.
So today he starts off by smiling when he sees you come in, as well as turns his head to figure out who it is entering his room. Then he proceeds to try and talk, but he makes no noise (since the vent is still in, so that doesn't change the talking thing till' the whole vent is gone) So he is trying to talk and we are trying to figure out what he is talking about, which is really hard mind you, and he has the same frustrated face as he did before all this happened, so it's definitely Josh, thats for sure. (at least I know now that he didn't get switched while moving between hospitals, or I'm just hoping that he remembers that I am the greatest sister on earth) Later, he thought he could write, and he took the pen and went to town… and there on the paper, after his "feeling accomplished" face was on, when he handed my mom the clip-board back, were a few scribbles, and maybe a circle, but it turns out he writes exactly like his sister did when she was on the ventilator, it must run in family. I for one have never written that horribly in my life
So I had a little fun with this update since he was having a good time today and was happy with the visitors he had. Also he was doing incredibly better since the trach was placed paired with the medications being tapered all combined almost turned him into, well him. Even though I sucked at being a lip reading translator I tried my best, but just so you all know, he actually looks just like Josh, so you should go visit him before he comes all the way back to his all normal Josh-like self and stuff. Because then he will be making fun of us all and being rude and stuff. Lol, just kidding.
My Mom and him are down there alone now plotting things I think, so I was trying to think of things that might make him happy, and right now I cant think of anything except for like Fuego (which we have yet to sneak into the hospital) homemade get well/rock on posters and things like that, anything that shows some love for his room. It's ICU so they have some restrictions, but I saw a room with balloons so who knows.
KEEP THOSE GOOD VIBES COMING
If you want to comment your phone number I will let you know more about visiting and such. (it will not show on my blog, theres also the email button on the top right side)
I may have almost lost hope, but its still hangin in there. Those prayers, thoughts, etc, they are getting it done!
My brother is doing so much better its a freaking miracle. The doctors here were almost sure he wouldn't be able to come out of this. (we were all 101% more hopeful and than the doctors at the first horrible hospital we were in were it was more than exhausting to be shut down all day, especially for our family and friends awaiting to hear good results)
Although still on the ventilator. Josh has now been awake and able to move his legs a bit, squeeze with his hands and wiggle his toes once or twice. He was moved a few days ago from Bellingham to Seattle, to Harborview medical center. Since he has been there he has made some major progress. After confirming brain function and that there are no issues in that department they are working to transfer again, this time him to the University of Washington medical center so that he can be near the Cystic Fibrosis and lung doctors. He will be in good hands!
Prayers work! Keep em' comin'! I want to send out a HUGE THANK YOU to all of our family, friends, and everyone else who thought of us. Thank you all for the thoughs, prayers, food, coming out to the hospital to sit with us and be there for support and everyone for just supporting Josh and my family it has been unbelievable! I did not forget those texts that have been flowing into my phone sharing hope and support either, THANK YOU ALL AS WELL!
Thanks again and I will update soon!
Help me out here! My brother and family need every good thought and prayer from everyone who reads this. There is still a good chance he will wake up.
& things). January 5th he will be 21 years old! He has been in that "rough patch" of CF for some time now and has started needed oxygen to help him breathe. As well as getting closer to trying to get on the lung transplant list.
He recently went into the hospital for a clean-out (normal I.V. antibiotic treatment) and it took a turn for the worse. He aspirated and went into cardiac arrest leaving him on life support until something happens otherwise.
Although there was hope given to the crowd of family and friends gathered in the ICU last night, his situation is still on the rough side. Besides waiting for more testing, and results, we are asking for any prayers, good thoughts, and love you can send his way, and also our way, his family, and friends while we wait for news.
Thanks and lots of love.
To my bro: hang in there we are all pulling for ya, theres a world of people out there who love you more than you know. <3
For those of you who didn't get the chance to meet my brother personally I grabbed a few quick pics I could find so you'll know who the prayers are for
First off, people are amazing. No matter how many times you or I may think otherwise, there are A LOT of amazing people in the world, and a lot of them in your own backyard. You just can't ever, NEVER EVER, let the people who are rude, ruin the fact that amazing people are out there, everywhere, most just living humbly while being wonderfully awesome.
With that said, I need to fire off a massive (in terms of words) list of awesome people that I must thank particularly today, which I must start with my donor, the person whose life had to end too soon and had a very bittersweet ending, since theirs ended at the very beginning of mine. Their healthy lungs fueled my brand new life. There are no words to express that thankfulness to a person who basically passed away only to give you the chance to survive in the world with people, the ones you love, and the ones who love you back.
People, it may have really only been one's life that changed, but many people are the reason that my life is the way it is. The reason I have this gift and second chance.
Next I must talk about my donors family, the idea that they had all the power in the world and in all their heartbreak to say yes or no to organ donation, YES OR NO!! They had the power to pretty much decide if I lived or died because I didn't have much left. This makes them 1 in a million on the list of people that I am more than extremely grateful for, I very possibly may not have been alive without them and their selfless decision. It is very possible, almost completely, seriously, honestly, am 100% certainly, possible that if I were to encounter these people I would either pass out, or be completely SPEECHLESS. Or most likely both. It is just too much sometimes knowing they are out there, grieving the loss of their loved one, while I am living some of the best times of my entire life. Lastly I must thank my family, friends, and my larger than normal group of people who form the greatest support group I could have ever imagined to have in my life, without them, this second chance at life wouldn't be anywhere near the same.
I know now and forever that I am and will continue to be speechless. Speechless to be alive. Speechless at my quality of life. Speechless at medical techonology, doctors and surgeons. Speechless at peoples generosity and support. Speechless <3.
Switching gears for a moment. As I sit here on my computer. Having just done a short bike ride yesterday, awaiting the weekend which I have been preparing for since I decided to go on this grand adventure for my 1 year lungiversary. I began thinking about 1 year ago. I year ago yesterday I was sitting in my bed on my bi-pap wondering if I was even ever going to be re-listed. Listed so that I would have a chance at new lungs, or even the hope of getting new lungs in the future. 1 Year ago, I knew that my lung function was less than 17% as it had been dropping and had not been tested for over 3 months. One year ago I was strapped to oxygen at 5 liters just to get barely 90% Oxygen saturation out of my Cystic Fibrosis infected lungs, strapped to my bi-pap if I needed rest, strapped to my IV which held life sustaining antibiotics that were no longer working, sucking on nebulizers with antibiotics and other things to ease my tired lungs and hopefully help the multiple daily coughing fits, strapped in my vest attempting to shake out the nasty bacteria filled mucus that plagued my poor dying lungs, strapped to my feeding tube trying to keep my weight up so that I wouldn't wither away before I got the call if i was blessed or lucky enough to even be re-listed. I was in that life, the life I had been living since my parents found out their 8 month old daughter had one of the rarest childhood diseases know to America at the time, knowing that I would not live into my teens or even that, not knowing what to expect in anyway except that I was their first child, and this diagnosis was our reality.
Lung transplant was the only reality worth having hope in for end stage Cystic Fibrosis, because no one wants to talk about the real unavoidable truth that accompanies end stage CF.
Exactly 1 year ago today I was re-listed. Finally, after almost all hope had dwindled to nothing, after the unavoidable questions started rolling through my brain. Thats when my dad got that call, the one we had been waiting for, and when he told us what had just happened we were just carrying on as normal, just knowing we needed to chill, pack go-bags like the other times I'd been listed, knowing we had to have our phones with us at all times because at any minute we could get that phone call. All the other times it had been months on the list and nothing had happened, hope wasn't as it used to be when waiting to be listed, but we had a certain excitement that only could be explained by the relief we felt as if we knew I might not die waiting for new lungs after all.
I might make it. The hope gained from being listed is immediate.
The part that is insane is what happened next. Around 10:00PM on September 15th 2010, only hours after the call alerting us of my re-listing, my dad received another a phone call, from the University of Washington, saying that they had lungs, they had new lungs for ME. Yeah, it was a bit hard to process, when only moments before we had gotten the call of the re-listing, who would have thought? NOT US! We both hopped in the car in a heartbeat, knowing we would feel better if we were already down there, my mom staying to pack last minute items in case she ended up down there for three or four weeks at a time, and attempting to call our close friends and family as well as she could, while other friends carried out the phone tree we had prepared months before. We arrived late as my dad was driving slow, slow driving and an already 2 hour drive equaled A LONG TIME IN A CAR WHILE PRACTICALLY DYING INSIDE. We were both in extreme shock and barely exchanged a word the entire way, this can't really be happening… that is all I could think.
It just a dry run. Its a dry run, I know it. Everyone had a dry run and I hadn't had mine so this had to be it! There is no possible way I am getting lungs tonight, that is just insane.
Or so I thought… Upon arriving at the hospital, after 1:00 in the morning. I was placed in an ICU room, the ones post lung transplant patients were taken to after their surgery. I changed into hospital attire and they told me to get comfortable and sleep if I wanted to, which felt like the farthest thing from possible to try and achieve at that moment. Eventually I passed out around 3AM probably from stress or sleep deprivation, who knows. As I woke up only hours later, it all seemed so weird, friends started arriving and family stayed close, all not knowing if this was going to be their last goodbye or a shared group effort in good thoughts so I would know that all these people would be there when I came out of recovery, and they would all be exactly the same. Either or we sat around, now September 16th 2010, trying to ease the feeling of anxiousness mixed with worry and a tiny bit of heart failure shaken in. They kept pushing back the time they were supposed to come get me saying, 1:00pm is the time, then 2:30pm etc, which made us even more on the edge. As nervous as we were, as soon as we finally calmed down a bit and began to set up a game, they came.
HOLY SHIT! And we're rollin'
Rolling away was, well.. I have no idea, it was like a moment of blackout, because there were only 2 thoughts in my head at that point. Here I go, I am either going to wake up with new lungs, and a second chance that not very many people in the world have been given, or I am going to die on the operating table.. Right then at that exact moment, rolling away from my mom after close to 10 failed attempts at getting an IV in my wrist artery for arterial gasses and other things, also proven good for taking your mind off of what was actually happening, I came up with a conclusion to fix every feeling I had had since the time of the call. This was it, I had a good run, I did everything I could in every aspect of life and I was content, If I came out alive, it was a bonus, but I wasn't afraid to know I might not wake up. I was only afraid of the people I would be forced to leave behind, all of them, the ones I loved.
1 Year Ago TODAY I Woke up with new lungs.
And here I am. Who am I to thank? MY DONOR OF COURSE! As well as doctors, nurses, & family.
I won't even begin to bore you with the facts, in other words, what I've been able to do since the day I walked out of that hospital less than a year ago, but, breathing 100% of the oxygen that I was meant to breath just had to take a detour. Lets just say RoadTrips, VisitingFriends, Snowboard, TrainMyDog, Hiking, Biking, Driving, SpendingTimeWithFamily, TravelbyPlane, Running, & among other MiscellaneousAdeventures I LIVED IT UP!
HERES TO YEAR NUMBER 2!
Dobby is the name I gave my Grandma when I was very little. She has always been there for me and been the greatest grandma in the whole world. I could never thank her enough for all that she has taught me, given me, or for all the years she took care of me weather I was healthy or sick.
So HAPPY BIRTHDAY DOBBY!! I love you a ton!!
Of all the Grandma's in the world. That ever there could be. You'll never know how glad I am that God gave you to me.
What could be more precious than a grandmother's special love, she always seems to know the things that we are fondest of. She's always ready with a smile or a loving word of praise; her laughter always brightens up the cloudiest of days She has an understanding heart that encourages and cheers; the love she gives so freely grows deeper with the years. Her wisdom and devotion are blessings from above; nothing could be more precious than a grandmother's special love.
I cannot believe its been almost a year already Time flies, and doesn't at the same time. I mean, I know how long its been in reality, but it seems like I've been privileged with these lungs for a lot longer than I've had them, and to think that for like 3 months I wasn't even home yet, and even longer I was recovering, it's just INSANE!! Considering the time I've had to do things and what I have accomplished, again INSANE.
I am over half way through the first year with my amazing new gift. Of all the things I thought it would be and of all my hopes for this year, dreams and expectations. Everything I am grateful for has been doubled and tripled through this experience, and the time I've been able to spend with my new lungs has been an incomprehensible addition to my already extremely awesome life. My new lungs, which have somehow changed basically every aspect in my life, especially my abilities, the things I have accomplished since, and my future goals overall. It is just a matter of time before I hope to move on to bigger and better things as I continue my new life with these lungs.
It's still quite difficult to comprehend that doctors are even able to transplant lungs. What boggles my mind is my ability to participate in many things I had not been previously able such as travel, (by plane, ferry and long car trip) without the worry about much of anything related to my health, or anything else really. It's still impossible for me to even imagine the things that I have done since my transplant such as running, biking, hiking, snowboarding, as well as the traveling among many other things. Most things I had not been able to do for years before. Some things i was never able to do. One thing that is a huge blessing and change is the ability to make plans, whether it be a week, month, or year in advance. Most people wouldn't think anything of that, they plan things all the time and expect to make it, but when you are chronically ill, you really have to wait for the day before and even then you might not be able to do what you had planned.
“No duty is more urgent than that of returning thanks.”
I don't know what I can do other than thank god and my donor everyday and live my life to the full so that others can be inspired by it. More importantly, so that others will realize the life changing effects that the decision of organ donation has. The incomprehensible change it will have on entire groups of people, including, but not limited to, friends, families, random passerby's, not to mention the recipient who's life is forever changed with a higher quality of life and a permanent thankfulness that can never be taken away.
So today, before my lungiversary, my 1 year anniversary with this so gracious gift which I have been so blessed with, I just wanted to reflect on the awesomeness of this life I have been given and my thankfulness for my donor, their family, my doctors, nurses, family and friends for getting me to where I am today, keeping me alive, supporting me and giving me this opportunity and chance at a whole new life, something many people would dream of, even better than winning "the car" on the price is right!!
I would thank my donor from the bottom of my heart, but for my donor my heart has no bottom.
"There are people who have money, and people who are rich." - Coco Chanel
I searched around for some quotes, pictures and things, so I will put my favorites up. First off I looked up a couple definitions to try and get more information, the first 2 are from dictionary.com and the second is a Wikipedia article.
1.having wealth or great possessions; abundantly supplied with resources, means, or funds; wealthy: a rich man; a rich nation.
2.abounding in natural resources: a rich territory.
3.having wealth or valuable resources (usually followed by in ): a country rich in traditions.
I take this as basically saying: having an abundant supply of possessions or wealth. The definition below says that wealth is having money or valuables in quantities.
1.a great quantity or store of money, valuable possessions, property, or other riches: the wealth of a city.
2.an abundance or profusion of anything; plentiful amount: a wealth of imagery.
a.all things that have a monetary or exchange value.
b.anything that has utility and is capable of being appropriated or exchanged.
Under Rich in "wikipedia" it directs the user to Wealth. Here is what it says: Wealth is the abundance of valuable resources or material possessions, or the control of such assets.
Wealth doesn't have to be these things!
"Energy creates energy. It's by spending oneself that one becomes rich" - Sarah Bernhardt
Ever thought about giving yourself away? Helping others or doing things for other instead of yourself? It doesn't take much, hold a door here, say something nice to someone, even bigger things like donating to a charity or volunteering for an organization. According to this quote this might be one way to have a full life becoming rich.
I believe that wealth comes from love, happiness, and those who surround you. I know I am rich because of the people I have in my life, friends, family and pets. I also feel rich through my experiences in life. The fact that I got a second chance at life through a double lung transplant is another thing, but even without that, as just before I was days from dying of complications related to Cystic Fibrosis and I knew I was rich. I feel like no matter what comes my way I will die a rich and happy person.
"Not he who has much is rich, but he who gives much. - Erich Fromm
“No matter how little money and how few possessions you own, having a dog makes you rich” - Louis Sabin
The quote above may be the most true
To be able to give away riches is mandatory if you wish to possess them. This is the only way that you will be truly rich. - Muhammad Ali
Who is wise? He that learns from everyone. Who is powerful? He that governs his passions. Who is rich? He that is content. Who is that? Nobody. - Benjamin Franklin
So how about try and live life and think of the reasons why YOU are rich! Live life like it was made to live, LIVE IT UP!
I found a really awesome blog from Amy Tippins, Founder and President, RockScar Love Designs, talking about her love for her donor. Click this link to read the blog.
I also have a lot of the same feelings. Though I am still unsure how to go about writing my gratitude and expressing my love for my donor in words to their family. I am extremely worried about causing sadness and stirring up emotion in a bad way, I would love to contact them but I do have this fear preventing me from that. I also do hope for my donors approval of my life and what I live for, but all in all I do thank my donor EVERY day for the chance to be alive a little bit longer, the chance to spend time with my doggies, my family, and friends just that much more. I feel like I can almost make everyday into a lifetime having this extra chance here on earth. So thank you donor. I am forever grateful.
I still have a super strange feeling about having these new lungs. The feeling that my life is unreal, like I had just dreamed it up, because honestly I didn't think it would be this drastic of a change, like my abilities and things. Then I go to thinking about how it used to be when I was fighting cystic fibrosis so hard, but its even so much better than I had ever imagined.
This is the life that I always wondered what it would be like to live and how I would live it if I was given the chance. Well, I'm finding out the answer to a lot of those and many other questions.
I was always a very happy kid, then a happy teen, and then I started becoming more and more sick. Although this never did tamper with my happiness, it started to take a toll on my ability to do a lot of the activities that I loved and formed my life around. Then instead of sports and being active I was only the disease. Not long after Cystic Fibrosis really started taking away ability to even complete daily tasks such as shower and walk without needing a lot of supplemental oxygen and still being completely exhausted.
It's not just that I am able to breathe now, I am able to really live, live without a lot of the treatments that I grew so accustomed to throughout my lifetime, live without the constant state of sickness not knowing if I could plan something for the next day or if I would be to sick to leave the house. The hours upon hours of mucous clearing, breathing treatments, vest machine, and IV antibiotics, among other things, are now almost completely gone. When getting a break from that is just hard to even comprehend having it all be nearly gone is just a dream. It seems as if I have so much extra time to do the things I never had the chance to, or was never able.
Even though I cannot believe I was given this second chance at life, and even though I can't believe I have had these new lungs for over 6 months now, I have to thank God, my donor, doctors and nurses, and my family and friends everyday for supporting me in this journey that I can't even believe is real.
I love you all!
PS: It is real
"There is no fear in love; but perfect love casteth out fear ... "
1 John 4:18
Your task is not to seek love, but merely to seek & find all the barriers within yourself that you have built against it.
Today I will be living for Conner. Breathe easy little fighter. Please keep his family in your thoughts in this super rough time.
I wish I could sleep. I finally see the difference between overdoing it with exercises to keep my lungs healthy and passing out all day. That was a way to keep me alive and keep my lungs clear. AND allow me to be so tired and actually sleep. But I never felt like I was doing enough. I always ran out of energy before I could do something good. I was living by example. I did what I could. I did what I had to to live. To my best ability. After everything had been exhausted. After accepting loosing everything. Even the ability to pee on my own. That is when I learned I did everything wrong.
I never knew how much I needed to share my thoughts to help people. A lot of times in the bible I felt Jesus just lived by example. I felt like that's what God wanted. I felt after I read about Jesus' life more and more he told a lot of stories. The stories that answer all of your questions about life.
I like being underestimated. But I don't like when people treat me like I'm stupid. I like patient people who try to make things easy for everyone to understand. Not only the smart ones. I hate when people think I'm smarter than them. No one person has any less self worth than anyone else. No one is any smarter or dumber, some people you just have to try harder to explain things, and differently. Some people you have to open up to before they will open up to you.
Some people need words. Some need photos. Some need music. Some need videos. I'm going to try and include these all in my blog eventually. But I feel like an idea is not properly conveyed without the use of graphics, art, videos, pictures, sounds, music. The little things. be patient. People need sleep!
I like to have fun. I expect you might GET more about my life after by learning about me. Thanks for the love.
the more you want the less you need. the more you need the less you love. the less you love the less you live. that want you were saving for just cost you the love in your life. still want it?
Jesus basically said that every minute you worry you take a minute off of your life. What if you had minutes left? Wouldn't you stop worrying? Just to be with the people you wanted for a little longer? THAT is the ultimate love. That is Gods love for Jesus. And all we are asked is to be as much like Jesus as we can be. That's it. Nothing more nothing less. He gives us back what he says he will. If you don't doubt. You just can't expect too much too soon. Because with God. Everything is just right.
Don't you want that love?