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January 28, 2010 - Transplant Meeting Outcome

Hi Everyone,

As you know, Greg's case was reviewed by the transplant committee this afternoon and he was accepted as a good transplant candidate. That was awesome news. On the heels of that, we found out that at this point, they have him classified as a "Level 2" since his condition has improved a lot with the use of high doses of IV diuretics. Carolyn, the transplant coordinator, only had a moment to speak to us after the meeting and said that she'll be back tomorrow to discuss status and applying for "exceptions".

Since we only had a VERY limited conversation with her and Dr. Lefrak (the surgeon), it's hard to anticipate what's going to happen, but it's left us kind of "reeling". We're caught between feeling grateful that his condition has improved and disappointed that he's not going to be on a "faster track" toward transplant and return to a more normal life. He's doing a great job of accepting this new turn of direction, but it is another dip on the emotional roller coaster.

Today, he was switched from the high dose IV diuretics to oral diuretics so we'll be anxious to see how he responds in his daily weight tomorrow. His pacemaker was readjusted today and it is now pacing the top and bottom chambers of his heart. We're hopeful that this will also aid in his cardiac function. The surgeon came in this afternoon and removed MORE tape from his chest (OUCH!!!!). He is beginning to name the faces on his chest and abdomen made from all the surgeries. He'd probably enjoy any suggestions you might have :)

He was moved from the CTSDU (Cardiothoracic Stepdown Unit) to the Cardiac Telemetry Unit on the third floor. He will likely spend a bit of time here in the future since they care for a lot of the heart failure/ transplant patients. His new room number is 316.

So... on a totally "mom indulgent" note, I'd like to encourage all of you who have children or really to all of you who have ANYONE you love --- give them a hug right now and tell them that you love them! Their lives are all so precious and we often take those we love so for granted. My heart breaks sometimes when I look at Greg struggling through all these procedures. And I must say that I marvel at his attitude and tolerance and courage for all that he's endured. He is a great patient - sweet and appreciative to all who care for him.

Along those same lines, a tragedy back in Pgh further compels me to say "I love you". Three of our son's (Tim and Nate's) classmates were killed in an auto accident on Tuesday night. I keep thinking that we have this HUGE network of people praying for Greg's life because it seems to be so threatened by heart failure. Yet, those student's families and friends totally expected that they would kiss them goodnight and see them the next day. Life is so very uncertain and fragile and therefore we are reminded that the only sure place to put our hope is in the Lord. That is where we are resting right now - trusting that He knows the plans for Greg and the path that we need to walk. We so appreciate your support and care as we walk through this whole thing.

Greg is SO looking forward to a visit from his brothers and Dad this weekend!!! I feel like I should warn the nurses of the noise that will undoubtedly erupt from his room, as they launch into their usual enjoyment of each other's humor! Please pray for them as they travel down tomorrow and for us all going back on Sunday. I need to return to work next week and it's going to be hard to leave here, although I look forward to being back with the rest of the kids.

That's it for now! We'll let you know how tomorrow goes. Don't forget - tell someone that they're important to you and that you love them.

Love, Greg's mom

PS He and Elise are TOTALLY enjoying all your comments, so keep them coming!

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