Sorry not to have posted. First and best, Emily has been discharged and is now resting beautifully, breathing peacefully, still asleeep. Stepping back to night before last when we posted the planned discharge. Late in the evening after all the treatments were done Emily decided to walk, totally free of encumbrances. No poles, no wheelchair, no pumps, and no walker. Just her and her new lungs headed off into the the quiet hospital.
UWMed is big place and from very early til very late it is just swarming with packs of white jackets and blue backed scrubs and patients and their families and friends. Patients and their supporters and in their bearing you can see every level human emotion from well again to never going to be well again. But at mid night it is very quiet and we went exploring. We did this three years ago but then Emily was in a wheel chair tweaked over to one side with pain a few days after being transported by ambulance from Eugene to Seattle. Not this night, she was striding out and feeling strong. We walked a lot of the back
administrative hallways and checked out the very nice art work that fills this building and makes it a much friendlier place than most hospitals. Then we snuck past security and went into the Surgery
Pavilion , which is very new and cool building with a flashy stainless steel and glass circular stairway. Up and down for about three floors until she was satisfied. Then back to her room for her early morning blog posting and finally to bed at 3 just in time for the 4:30 am xray and begining of rounds at 6. It caught up yesterday which turned into a truly endless day and she was in a pattern of not enough pain meds and too much. Uncomfortable or sluggish. The day was filled with final rounds by each team and near constant visits by various parts of the transplant team.
I am going to post this now and add to it later, seems we are busy trying to settle in to our apt.
P & N did a great job finding it. we can see the space needle and mt rainer and the water.
Emily is up, hungary, and seems to have pain v meds balanced. check this uot later, it will have smae tittle just longer
Later : All of the visits filled the day and it was just getting dark as we left the hospital and headed to our new home for the weeks ahead. ( up to two months ). Emily is doing well this afternoon and just got a call from the transplant team setting up appointments the next several mondays. There is now going to be careful and constant monitoring of infection/rejection.
It has been a beautiful day here and we have just been slowly putting things away and relaxing a bit/ It is certainly a welcome change from the pace of the hospital. An address for our new place will be posted soon. No doubt Emily would love to heat from you by snail mail.
thanks for helping us get this far.
Oh Happy Day!!!! Way to go Emily, finally free and able to sleep without being bothered by vampires and nurses wanting this and that. Sounds like you have a nice place to recover and enjoy your new lungs. Enjoy the view and breathe in deeply all that fresh air.
ReplyDeleteI'm looking forward to more stoned stories, the images your brain comes up with are hilarious.
Stay well and know that you are loved,
Nita
What a wonderful vista with which to recuperate. It's one of my faves and I always visit that part of Queen Anne when in Seattle. Seems like the excitement of feeling well caught up with you Thursday. Glad you're back on the mend and in an environment where you'll get more rest. Keep soaking in the beautiful views - you can never get enough of them - very restorative!
ReplyDeleteLove to all - Pat
Hi Emily,
ReplyDeleteWay to go! Glad your are away from those medical types, nurses especially are a weird bunch!
Your home away from home sounds like a healing place. I can picture you climbing up the flanks of Mt Rainier with those new lungs of yours.
The most difficult part of the trek behind you.
Peace and love,
Allison
Man, that is all just so encouraging. To have her walking around free of all that rigmarole must have been so satisfying for you guys. It's like a rebirth, you know! That's just way, way, way, cool!
ReplyDeletekw
Each time I look at your blog I get teary. I am so happy for you all, thanks for sharing.
ReplyDeleteWay to go Emily and all! Can you even imagine not being invaded by nurses, docs and all the other peepers at 3:30, 5:30, 6:30 AM ad infinitum...? imagine a night without probes and pokes? Well, now you can - and after a morning or two of sleeping in, I am sure you will find it all delicious. And Queen Anne will give you a nice place to explore in the weeks ahead. Enjoy.
ReplyDeleteSo, in the spirit that your blogs always bring many different things to mind - and you might want something different to think about - I offer something brought on by Emily's description of filling her little alveoli and lungs all the way to her spine. I always wondered what it would be like to be a bird - able to fly at will to wherever, and look down as much as up on earth's daily doings. To have a bit of a different 'view point' on our world - but I hadn't thought much about what it would be like to breath like a bird. maybe you have just hit upon it! Bird lungs are a bit different from our own - 'though maybe in some ways a bit like your still 'incipient' or 'growing in' ones. A bird's lungs are not the blind alley sacs that ours are, but are a flow-through system (though they act either way, really) of air sacs, big and small, throughout (much of) their body. But more to the point, a bird's lungs include their bones! Yeah, their larger bones are hollow - for lightness, if nothing else. Imagine flying around with our big heavy sculls and femurs dragging us earthward. But not only are bird bones hollow, but these airspaces help transport that life-giving oxygen stuff more efficiently than just the circulatory system could alone. So, when you spoke of bags of air under the skin and filling up your lungs all the way to your spine, I had to wonder if a bird about to take flight might feel that same up-puffing of sacs and bones and chest. The mythical, 'incredible lightness of being?' Can you fly too? I'm sure you are.
All the best,
Kip et al.
Allison makes a good point. Perhaps a trip up Rainier is actually now on the horizon - Em and E-Beth, dragging their dads behind them. =)
ReplyDeleteHey Emily,
ReplyDeleteReally pulling for you. Just found the blog thanks to Steve Brown. So excited for you. I ski with Keith--actually Keith skis and I sort of traverse down the hill--and have been following your progress these past years. I'm thrilled for you.
Don Marsh
Don Marsh
hey emily! congratulations on your release and continued success! i send you lots of love and support from a little internet cafe from the hills of honduras! all the fellow PCTs send their good wishes!
ReplyDeletelots of love,
darby
YAAAAY! Congratulations to you all... so excited that you are out of the hospital, and into what will be home for the upcoming weeks. I hope you can all get some sleep now!
ReplyDeleteBrooke
Hope your day is better and it so great that you are out of the hospital and living in beautiful Seattle. It is so fun seeing where all your friends are writing from and what an amazing network of friends you have.Keep up the good work and say hi to your parents. Sending you lots of long distance support and love. Gay
ReplyDelete