Tuesday, December 31, 2013

Surprise Discharge

Well...the charge nurse came in this morning to tell us she thinks Danny will be discharged today. With no time to process the news, a social worker comes in (whom we have never met) and spends about a minute and a half giving us instructions in a dry, uncaring, unpleasant tone. Danny mentioned something a transplant coordinator had told us about communicating with the donor family and she quickly shut him down (not easy to do) and disagreed...then asked if we had any questions! Unbelievable. When she left we went to the nurse and asked for the other social worker to call us. The other one is usually LVAD and pre-transplant and this one is typically post transplant. But, we have a wonderful relationship with the first one and she told us long ago that we can request to keep her if we wished. Well, we wished and we received!! In this incredibly stressful, overwhelming, and scary four months that we have been at Ochsner, I think we have dealt with maybe 3-4 people we could have done without meeting. Everyone else has been an absolute delight and truly a blessing in so many ways. The people associated with the LVAD clinic are people who I truly miss and wish that we had a friendship with on a personal level outside of the hospital. The good news is that the transplant clinic and the LVAD clinic are in the same area, so we will see them routinely for a long time and less frequently for the rest of Danny's life! 

Danny almost fell apart with stress about being discharged today...we were prepared for Thursday. However, the transplant team reassured him, we have many direct-access phone numbers, and the hotel is down a hallway not too far from the current hospital room he is in!

On a sad note, he is scheduled to have his favorite meal tonight...as shocking as this may be, the hospital cafeteria food is not very good~even in New Orleans. We are considering hanging out in the hospital until after dinner. After you've been in the hospital for a while for a serious, life-changing event, the hospital becomes the comfort zone and it is truly scary to walk away. I've cried at every discharge. I don't know if that's normal or not, but it's definitely how we feel!!

I forgot to mention the one "issue" with his biopsy yesterday. After the surgeon feeds the tube through his carotid artery down to his heart, the nurse is supposed to flush the line. She didn't attach the flusher device properly so the water sprayed all over Danny inside the "tent" he was in. He laughed and thought it was a nice shower...remember he hasn't had one in over 2 months since the LVAD. The nurse was really embarrassed and said she had never done that before. Then, when she went to flush it again the water went all down Danny's back like a bath. They just laughed and decided it was something cooky with Danny and that lab.

I found out something I am so excited about I just can't hardly stand it. We get to see his old heart!!!!! We can touch it and hold it. One of the pathologists will set it up so Danny and I can go. The transplant coordinator said that his first heart was truly amazing looking. It's about the size of a dinner plate and it a grayish, greenish color. She said when you look at it it's hard to understand how he stayed alive as long as he did. I am so excited about this "field trip" that I have butterflies in my stomach!! This coordinator (who is one of the most positive, uplifting, and wonderful people ever) also told us that Danny's new heart could not have been a more perfect match in terms of size, age, strength, and of course blood/tissue type. We are praying that the donor family will want to meet us and also that we will feel content if they do not. They have given us such an amazing blessing. 

Here's Danny all ready to go...real clothes, no needles or wires anywhere. Stay tuned to see whether we stay for hospital lasagna or leave for cafeteria something else...Or, we could get in a car and go to a restaurant. Yaaaay!! He will have to wear a mask the whole time except when he is actually eating. I saw a little girl a while back downstairs who was wearing a mask decorated with bedazzled jewels...I sure did have a lot of fun decorating his driveline dressings with the LVAD. I need to find a way to express my creativity in a way that he will wear on his mask!!

Quick nap before leaving...Lasagna or not? Big decisions :-)

We will need a cart :)

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