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
Today was my first pulmonary function test with the new lungs! A month before the surgery my fev1 was 17%. Today it was 58%! My mom and I were pretty excited. The last time I had lung functions this high I was running 5k's and snowboarding up a storm! So back to that I go! I want to thank the donor and their family, my prayers are with them and I am just really thankful that they were kind enough to go to organ donation. It has been over 3 years since my lung functions were in the 60's! P.s. Possible hospital release tomorrow!!!
So today I got to take my first real shower since before the transplant. So yes.. I have not taken a shower for an entire month! It felt soooo good! The other awesomely amazing thing about my shower was that I showered all by myself, standing up, WITHOUT getting short of breath at all. AMAZING! Anyways, I am super excited about that. My port had to be accessed right afterwords so I am not yet IV free, and I am still hooked up to the heart monitoring. But other than that Im not on the iv pole or anything like that anymore so I am a bit more free than I have been for the past 3 weeks.
On other news, I have been very busy with the leg exercises and walking. I walked 3 large loops today, while it was a bit of work on my tired legs I felt pretty good!! The masks I have to wear are a lot of work to breath in but I am definitely getting used to them. My legs have been so sore the past few days I need help getting off the toilet since I cant use my arms at all yet. I think thats pretty funny.
More updates to come!! Much love! -nina
Yay! We are out of the ICU finally and my momma gets a real (sort of) bed to sleep in! Saw some Dr's and stuff today and everyone was pretty happy with me. We might be headed out of the hospital early next week!! Today we stopped my tube feeds because I have been eating so much and I barely have any weight to gain back.
They came with a wheelchair to pick me up for an xray today and I walked all the way down and back myself! Amazing! I could have never done that before, especially without oxygen. My o2 is 95ish and 93 at night which is weird since ive been sleeping on o2 for the past 6 years.
Anyways, so far so good in recovery-land, minus the burning chest while trying to cough the last of the mucous but I'm pretty sure I can handle it. Sorry I dont have any photos for you today, but I will get one up soon I promise!
Much love! Nina
Christina FINALLY got a lung transplant after all these years. She needs to live within 30 minutes of the UW medical center for at least three months and needs your help renting a clean place.
It's been a long road for Nina but almost back to shredding the pow pow!!
Follow her recovery on her blog
Today I had a great start to the day. Got off the vent, FINALLY!! It feels SO GOOD! After that I washed my face, brushed my teeth (while standing) AND walked 3 whole loops of the ICU. Now I'm sitting in a chair as I have been since the tube came out this AM. Buhh byee bed! Now I just cant wait until I can eat and drink. I'm going to send out the Nina bat signal for all to bring good snacks!!
These photos are from the other day but I thought I would share them anyways. We are freaks... (Thanks Rachel for the visit and help decorating... the room and myself) Everyone has been coaching me through my breathing so we decided I needed a bib number. Now I have one! We tape it to the walker when I go on walks as well.
Today I am cranky Nina! This is because I am still on the vent and its been 15 days. So yea... a little frustrating. Just have to keep thinking about next snowboarding season I'll make it up for, or the next run I will get to do with my mom that I never got to do before.
I have had multiple people, hospital workers etc. telling me I have one of the best self controls of anyone they have ever seen on a vent and how most people are only ever awake for 30min at most. Not 15 days...
Anyways. Hoping to get it out soon so I can get back to work (playing)!
Well the last word I heard last night was that the surgery was a great success and that the lungs were a "magnificent" fit. Nina's lungs were really finished and the timing couldn't have been better.
Another important point not to get lost in our own excitement, that we all should take a moment to think about, was sent from Gwyn last night.
"We should all say a thanks to the donor who lost today what Nina has gained. She will take them on many new great adventures."