Tuesday, January 19, 2010

Starting Over After the Crisis

I'm sure all of you experienced the same elation we felt when Graham rallied and survived the crisis of this past weekend. But it is abundantly evident to us that those events were costly to Graham's health. In many ways he is not as well off as he was before the dramatic downturn he suffered on Saturday.
Graham is now fully dependent on the ventilator. Before, Graham was assisting the ventilator, doing much of his breathing on his own. Now, he is fully dependent on the ventilator. But his pulse ox level is 100%, which is a positive.
Before, Graham was actually ingesting breast milk through a tube to his stomach, and he was pooping. Now, his digestive system is no longer functioning at that level. He is back to getting his custom-made nutrition (TPN) through his central line.
More worrisome, new symptoms that occurred during his crisis have not gone away. Although improving from the dangerous low of 30%, his heart function is still not back to normal, as he is now battling blood pressure and heart rate problems. He continues to need fluid removed from his lungs, though thankfully there is no longer blood in this fluid.
A new and disturbing development in the form of a rash manifested itself yesterday. After the long fight to get rid of his previous rash, this is disappointing news. The big worry is staph. The Dermatology team will do a biopsy today to try to get some answers.
Some positives ... Over the last 24 hours, the docs have started to wean Graham off the nitric oxide, which he seems to be tolerating well. He has also been taken off dopamine, which was used to improve his kidney function. This has resulted in slower urinary output, but it is still at acceptable levels.
Graham has been knocked back a few steps, but if his brief history of comebacks tells us anything, he will soon begin to charge forward. As so many of you have said and thought, he is one tough little man.

19 comments:

  1. Katie & Bill,

    We're thinking about you guys. Stay strong.

    Love,
    Jim & Mylien

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  2. Bill & Katie,

    You are in our thoughts and prayers during this tough time.

    The Schenkel's

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  3. I'm keeping you all in my prayers. Stay strong.

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  4. Please know that you are in our prayers. Stay strong!
    The Bingley's

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  5. Bill, Katie, Quentin and Susan, Just want you to know that we are praying for Graham and also for all of you. This is and has been in the Lord's Hands; give Him your burden and fear and He will carry you and help you.
    All our Love, John and Laura Duerr, Rachel and Ryan Schiess and Aneta too

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  6. Hi, Katie, Bill, Quentin & Susan,
    Just found out how to work this "comment" thing. "Old dogs take a long time to learn new tricks"!
    All of us here in Woodbine are following the blog everyday. We all continue to keep Graham and all of you in our daily prayers. We all are feeling your pain.
    Take care and know we're thinking of you.
    Love,
    Edie, John & Susie

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  7. We are all thinking positive that he will continue to fight and stay strong. He sure is a
    tough little man.

    Love, Pete, Evangeline, Yiorgo, Niko, Ilias and Maximos

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  8. B and K, S and Q, G-man

    Our love to all of you.

    Scott and Bean

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  9. We pray for healing for Graham, wisdom for his health care providers and continued strength for all of you. Know that you are in our daily thoughts and prayers.
    Love,
    Beth and Jay Althof

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  10. Thinking about all of you daily. May God give all strength to keep on fighting and to keep each other strong. Love, Darlene and Murray Miller

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  11. Praying daily for your continued faith that all will be in God's hands. Know that so many are praying right along with us.
    Holding you all in our hearts,
    Charlene & Dave

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  12. Hey Bil and Katie...u know ppl round my work r gonna start thinking i'm crazy cuz everyday at lunch i check on an update and i usually start crying whether there happy or sad tears i can't help it. Graham definetly has a special place in my heart. I could not imagine what u guys are going thru, but you both r for sure some awesome parents!!! Hang in there Graham!!!

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  13. Bill & Katie
    We are from the Pleasant Chapel UM Church in Roanoke.
    Our thoughts and prayers are with you and your precious son Graham.
    Ned & Janell Simons

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  14. Stopped to check in on Graham. Thinking about you guys!

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  15. A quote: "A truly happy person is one who can enjoy the scenery on a detour". Hope this detour allows you to find some happiness and comfort. Especially knowing many are hugging you from afar.

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  16. Lots of prayers coming his way!!

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  17. There isn't a part of the day that I don't think about you and/or pray for you. He has shown in so many ways he is a fighter. If you need anything let me know. Love you

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  18. Your little Graham has really captivated our hearts! We are thinking of him and praying for him constantly. You are such strong parents. May God heal your precious little boy so that he can grow to be an amazing person just like his parents one day!

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  19. We keep checking in; you have so many people praying for your strong little fighter...and for you both. Thinking about all three of you....

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