Monday, December 30, 2013

Still Here continued...

Today reminds me of why I learned when this all started to blog in the evenings because things change so much during the day!!

They did take the chest tube out today...yaaaaayy!!! He was draining still, but they felt it was enough to remove the tube. Also, when he stands up and moves around the fluid will come out of the hole until it heals shut. So now the only needle or tube in him is the IV that's in his arm for protocol's not connected to a medicine. 

We will probably get the biopsy results tomorrow, if the lab gets to it. They are swamped since Wednesday is a holiday. Danny also has to have a heart cath again before discharge. So, the word is that discharge will probably be on Thursday...assuming all is well with the biopsy and cath and subject to change, of course!! :-)

We talked with the transplant coordinator for a long time this afternoon about the realities of life post heart transplant. As far as his diet goes, he will eat a heart healthy diet, but he pretty much did that before. Beef must be pink at all. He likes his steak cooked medium, so he will have to learn to change his taste! No grapefruit, in any form, ever. It counteracts one of the immunosuppressant medicines. That's it as far as food goes!

He will wear a mask outside of the hospital room, hotel room, or home once we are back in Baton Rouge for at least the first six months. Sick people should not intentionally come around Danny for at least six months also. Obviously the kids and I will be around him since we live with him, but we will try to stay in a different room of the house as much as possible when sick. We will need to keep hand sanitizer by the door for any visitors, and not go in crowded places at peak times. Mostly it's all common sense stuff. In time, he will be able to do all of the outdoor physical activities he enjoyed before end-stage heart failure and get back to a fairly normal life! We are very blessed indeed. We are going to write a thank you note to the donor family soon. We were instructed to do it with no expectations from them. Some donor families want no contact. For them, donating the organ is closure enough. Other families want to communicate, and some maintain a lifelong friendship. My personal prayer is that the donor family wants to meet us and maintain a relationship. Danny hasn't completely verbalized his deepest wish, other than how incredibly thankful he is. At any rate, once our letter is given to them, the ball is in their court. If they have decided that they do not want to hear from us, I assume the organ procurement agency would not even give them our note...and that's okay! It's been said that the best way to say thank you to a donor family is to take excellent care of the organ we have received we will certainly do that! 

Danny was so excited to get out of bed and strut his no chest tube and no wire self around the room...until the pain hit!! Then he crawled back into bed doubled over in agony. Poor thing. It will be a long recovery but one filled with lots of joy and hope for the future!! He even put on a real pair of pajamas instead of the hospital gown! When I took his picture I realized he does have a few wires, but they're all external so I didn't think of them. The wires poking out of his PJ top are for the telemetry thing (heart monitor) he has to wear as long as he's in the hospital. 

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