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November 27, 2010 - Bumps in the Road

Hi Everyone,

After an incredible day of EVERYTHING going so splendidly, we've hit a few bumps in the road that of course can be expected but are hard to go through nonetheless.

A total praise is that Greg's new heart is AWESOME!! We have heard from multiple people involved in the transplant process that it is "the perfect heart" and promises to be awesome for Greg. Unfortunately, he is now in the process of beginning high dose steroids and anti-rejection meds that have really unpleasant side effects. Yesterday, he suffered from severe shaking and tremors after the initial steroids and then later experienced some confusion, anxiety, and a host of other unpleasant symptoms. He is going to be on extremely high doses of steroids initially that will then be weaned down, but I THINK that we have about three months to get through before he is at a maintenance dose.

During the night last night, his temporary external pacemaker developed some problems, which also caused a lot of disruption to his rest and discomfort. Fortunately, his new heart is beating SO beautifully at about 80 beats/ minute, but they had hoped to pace him at about 110 beats/ minute through tomorrow, in order to promote the function/ bonding of the new heart. The doctors all conferred and don't see this NOT working properly as a real problem. Seeing his new heart monitor tracing is a real thrill for me, every time I look at it. His heart had been SO sick and the conduction through it SO disturbed that looking at the monitor tracing always broke MY heart. It's hard to believe that the tracing under his name on the monitor in the hall is really his!

Another issue that is being dealt with today is a lot of extra fluid that he has on board right now. As a result of the surgery and the fact that he TOTALLY enjoyed not having a fluid restriction yesterday after getting off the ventilator, he has about 5 extra liters of fluid on him today. They explained to me that they usually don't like to give transplant patients diuretics, since their own kidneys have to get used to the increased blood flow to them, which allows them to "auto-diurese". However, the doctor believes that even though Greg's kidneys are healthy, they are used to an incredibly HUGE amount of diuretics and so today, they have administered a moderate dose of Bumex (and Zaroxolyn) to him. Hopefully that will be effective.

Another concern is the fact that his right leg is numb below the knee. The surgeon explained that the catheter (which is very large in diameter) that allowed them to connect Greg to the heart/ lung bypass machine was inserted low on his right side. There is a nerve in the location that gets a lot of pressure put on it during surgery which can often cause these symptoms. They anticipate the symptoms being gone within one week hopefully and should not be of consequence unless he starts to lose the use/ mobility of his foot, which he has not.

He is also feeling overwhelmingly fatigued today and achy -- he described it as "having been beaten with a bat". That, along with the confusion about what's real and what's not and thoughts not feeling organized or clear are really troubling to him. It's a tough day today.

If you would pray for the concerns mentioned above, we would be SO grateful!

We are all doing fine. Elise continues to be incredibly faithful and strong - - able to console and comfort him when no one else can. She and I are taking turns being there with him pretty much all the time. He feels better when he knows that one of us are there and the nurses have been MOST understanding in allowing us to be present. We believe that he is getting incredibly good nursing and medical care!

His dad just left to drive his brothers back to their respective colleges and then will stay at home for tonight. We're unsure if he'll return to VA immediately, or spend a little time at home getting some work done before returning. In Greg's current condition, he (and the twins) haven't been able to be in the room with Greg and therefore it makes sense to try and keep track of life. It's EXTREMELY difficult for them to leave and if you'd please pray for them too, we'd be grateful. His brothers have their first experience with college finals coming up and this added stress makes it very difficult to focus. Additionally, one is going to be transferring to PITT starting next semester and there is a lot to handle with that move as well. Please keep praying for us!!

I can't begin to thank you all enough for the texts and emails of encouragement over recent days. They have been a real source of comfort.

OK!! That's it for now. I'm headed back to give Elise a long -deserved break. I left today for the first time and got a shower and clean clothes (YAY!!!) and she's going to enjoy that same luxury and some fresh air.

Thanks for praying us through this -- we're more grateful than you know!

Love, Greg's Mother

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