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December 9, 2010 - Concerns & Side Effects

Hi Everyone,

I'm writing this from home - it's great to be back, but it's hard to know that Greg is still struggling in VA. We know that he is definitely on the road to recovery but it's hard leaving him while he's still not feeling too great. However, as he and I prayed last night - we need to remember that God is STILL completely aware of what's going on and not one single thing is going to happen that he's not in control of. It makes it so much easier to be at peace knowing that.

Yesterday, after walking the two laps, he was EXTREMELY fatigued for the rest of the day - perhaps just too much at once? He did walk one lap twice more throughout the day, even though it was hard and he was exhausted. By bedtime last night, he was just feeling drained physically and emotionally. The toll of this two month hospital stay, the huge surgery and the extremely high dose steroids has all landed on him. He is desperate to be able to go home and yet concerned because he doesn't feel strong enough/ independent enough right at this moment. And due to repeated interruptions by every doctor, therapist, nurse, social worker and well meaning hospital personnel who have grown attached to him and have heard that he's going home soon, he's just not getting rest.

Today, he had his heart cath/ biopsy and Dr. Desai said everything looked good. The biopsy results will be back tomorrow. They are graded on a scale of 0-3 - if he has a 0 or 1, he will be permitted to go home and if it's a 2 or 3, he will have to stay through the weekend and receive extra steroids. They also removed the dialysis catheter from his chest today. As a result of both of those procedures, he was "bed bound" for part of the day and wasn't able to participate in the physical/ occupational therapy that he needs in order to be ready to go home. The therapist plans to be there bright and early in the morning to work with him in anticipation of possible discharge.

There is a little bit of concern because his blood count dropped a little again today and is at a level where he could be feeling fatigued as well. Dr. Desai didn't feel that there is danger of him bleeding anywhere and they're hoping that as his kidneys return to normal, their part in promoting red blood cell production will pick up again. Please pray that his blood count rises mightily and that he gets the energy that he so badly needs.

Another concern is the side effects of the steroids. I didn't realize until last night how much he is dealing with in that regard -- seeing things/ confusion, etc. It's so disconcerting and frightening, even if you KNOW that there is a logical reason for what you're experiencing. It's troubling him a lot and so if you'd please pray that he would have sweet, amazing, God-filled "steroid experiences" instead, we'd be so grateful. There is nothing that any of us can do to make those effects go away and he will have to continue to endure them for about three months until he reaches his daily dose of about 10mg/ day for a lifetime maintenance dose. That gets adjusted any time there is rejection.

Elise's mom will be leaving to go back home tomorrow, so Elise and Greg will be on their own again - fortunately with their friends ready in the wings to help as needed. They are such a blessing and we are so grateful that they are there. We are so grateful to the Newmans who hosted all/ parts of our family during this two week stay - what a blessing!

Also, thanks to ALL of you who have helped us and them in so many ways during this time. You are an incredible, amazing group of people and we are SO blessed to know you. Thank you for caring and continuing to pray and encourage. I'll let you know tomorrow when we hear any more news about the biopsy/ discharge.

Love to you all,

Greg's mom

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