Friday, February 20, 2009

progress report started fri am

First: Emily is still doing well. Hard to believe that it is friday. This week has sometimes seems a minute long at times endless. Fast time and slow time. The tortise and the hare. As Peg and I were waiting during  the transplant, that was some pretty slow time. The moments before way fast, a bit too fast. We all knew it was time for a transplant but separating in pre-op that just rushed right at us. It wasn't so easy walking out of that room and glancing back with the anesthesia team starting to get serious  .Started this  about six hours ago but we are moving a bit slow. Emily is out of ICU and on a regular medical floor. Many of the patients have had some pretty major stuff, transplants, open hearts, etc......It was a strange move. The plan had been one more night on the ICU but a patient somewhere in the building was in major trouble. Turns out Emily was the healthiest patient in ICU, and they were full, so we moved. Packed up the circus and left. Which was fine put got things off schedule and it was 3am before it was bedtime. And like any good hospital at about 6am teams of professional loud talkers start cruising the halls, being Seattle they all have the $5 coffee and ae wired and ready to go. Chipper, chipper, chipper. After four nights in the waiting room it hard to match their good grooming and chipperness. I think maybe Peg and Nicky fell asleep between bites of oatmeal.
Actually we are chipper because Emily does continue to do great. The epidural is still in place and the morphine pump at work. The drugs while controlling the pain are not without side effects. Emily is quite sure that she had a large dancing pineapple in one corner and a polar bear cub in the other two nights ago. I'm thinking it is some kind of sign that climate change is happening quicker that was expected. Walking is a big deal and tonight was an eight lapper at a very brisk pace and able to talk. She also had dressings changed and got to see her scar for the first time. It is looking good starting to heal and very impressive. Ir runs form arm pit to arm pit in gentle arc just below the bottom of the breast line. The chest tubes are still in but two may come out soon. This a big deal, real progress. The collection devices that the tubes feed into also indicate if there is air leaking into the pleural space. you don't want that. It occurred a number of times three year ago and resulted in a Pnumothorax, a collapsed lung. Post transplant she had some air leakage, as expected, and the leaks seem to have slowly sealed. This is wonderful healing and progress. The tubes are very uncomfortable so getting them out is very good. 
She is doing well....had her first visitor......got lotsa of energy from that and hoping for her first real sleep. Will try and get out more news and earlier tomorrow we have been pretty much sleepwalking today.
Keith 

12 comments:

  1. Nice work Emily! We love you!

    Steve, Jen, and Presley

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  2. Glad to get all the good news this evening. Have been waiting anxiously all day for the update. Can't wait for Em to pen in her iniminatable way and wit another entry into this most fascinating account of such a notable series of events. Keith and Peg, you are epic heroes and so fortunate to have The Woman of the Year as a daughter to share with the rest of us.

    BTW, Keith, Noles opened with a baseball victory today, 9-3 vs Hofstra. Minor stuff, though, after all the great news coming from Seattle this week.

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  3. Wow Emily! What a busy day you had! At the rate you're recovering you'll be home in record time. Your strength continues to amaze and inspire me. I can't wait to see what great things you do with this new lease on life. Keep up the great work, and I have no doubt it is WORK for you. Have you gotten used to breathing without effort? What's it like not coughing all the time? walking and talking at the same time?
    Peg and Keith, you two are incredible. I can't imagine going through the range of emotions you have dealt with this past week. Please know that we are praying for you too. Take care of yourselves as you care for your beautiful daughter.
    Look forward to hearing more of this amazing journey.
    love to you all,
    Nita

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  4. We continue to send our virtual love (feels so inadequate...) and be awed by all of you -- I feel...
    thankfulness and amazement at Emily's strength of body and character,

    empathic love for Keith and Peg, while understanding we can NEVER really understand the depth of pain and joy of parenting Emily these last 20+ years,

    shouting at the rooftops celebration of the capabilities of modern science and deep gratitude for the donor and family,

    appreciation for the detailed updates that keep all of us in the loop and give us such a visceral sense of what you are going through,

    realization that all our worries and stresses are nothing compared to the importance and criticality of Emily's every moment, and

    awareness that the circle of love that surrounds Emily, Keith and Peg must truly be ultimate living, measured in quality, not quantity.

    Emily, for all that you have dealt with in the past, are putting up with now, and still have to deal with in the future, I hope you take solace in the knowledge that you have experienced a depth of love that few humans through history have had.

    Hugs and thanks also to Nicky for being such a support to Keith, Peg and Emily.

    Emily, waiting to be on a river with you sometime in the future (or a mountain top, or watching you have a whipping cream fight with my kids, or just watching a sunset...). Hope you all get some much needed sleep.

    Lots of love,
    Lorinda

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  5. What a fabulous continuation of such amazing progress. Tears, laughter, joy and hope...so much of each in one short week. And, dancing pineapples and pandas. Maybe these are visions of all the places Em will be able to visit with her new lungs.
    I wish you all deep,restful sleep this night, with another gorgeous sunrise tomorrow...sure to be filled with all those chipper people.
    Love-Michelle

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  6. Hey Em,
    So glad to hear such wonderful progress and activity. These walks and laps around the track are beginning to sound like an Indy 500--lots of laps under the belt. Also sounds like Em and the Pit Crew are in for some well deserved rest. We're thinking of you. Dave and Kelly Oatman

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  7. Beautiful sunrise this am and hopefully in Seattle too. Hope you all will be able to get a well deserved good nights sleep and beautiful sunrise tomorrow. You all are so strong, guess that is why you are so good on the river.Take care and keep smiling we are with you.Love, Gay.Bob and Darby

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  8. Sounds like you had a good day. Keep hanging in there. Our sweet cat Grayce hurt herself yesterday and had to have a wound sticthed up today. Now she is hiding from us. We can't give her the pain meds and her antibiotic because we can't find her. She's in our garage, somewhere! She has one of those cones on her head so she won't bite at her wound. We didn't think she could hide very well with that on her. She's a smart little one. She kind of reminds me of you Emily. I'm not sure why?? Keep getting well Em. Keep having good days. And tell Keith, Peg, and Nick to get some sleep! Love you guys, Colleen

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  9. emily,
    i wish i could be in seattle, bringing you a beautiful bouquet of feathers. Your true tattoo of courage is now a beautiful crescent moon! I am ecstatic to hear of your laps of progress.
    I send so much love! -darby

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  10. Healthiest person in the ICU!!! That's my girl. Just read the entry to Gus, we are both sighing with relief. xoxo Elizabeth

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  11. So great! Can't wait til our bionic woman has had her bionic-ness removed so she can move around on her own :)
    Brooke

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  12. Hi Emily: We met you when you were small and you probably don't remember us but we stay in touch with your precious grandparents (Mary & Delma).We live in Tall. My mother/father-in-law are Gillun & Bonnie Davis and I am married to one of their sons-Danny. We have 2 children (Stephanie/20 yrs. old and Jordan 16 yrs. old)and they both have CF. They are doing well. We are so excited that your transplant surgery went well. We have been keeping posted with Mrs. Mary on your progress and have had you in our prayers. This is so encouraging for others with CF and what a courageous young lady you are. We will keep posted and we know you are already enjoying your new lungs and will continue to do so. Keep the faith and your positive attitude and you will continue to excel in your health. Luv--Rhonda Davis

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