Tuesday, February 3, 2009
Good end to the day
The day started with the hard job of getting the chest tubes out (see below). After a nap, Emily got up and went for her first walk. She was assisted by the physical therapy team and they made it down the hall and back. She worked really hard and accomplished much more than what was expected.
A truly watershed moment came for us when the did an echocardiogram this morning. We have seen many of her echos in the past (there's one at the bottom of this blog) but this one looked different--no thickened septum, no big "nose" protruding into the left ventricle, and most amazingly, when they turned on the Doppler to visualize the blood flow it positively whoooshed through without any regurgitation. We are finally convinced she has a new heart! Emily said about fifty times today, "I had a heart transplant three days ago!"
After sending Jeff back home last night, we had to say goodbye to Aunt Susie this afternoon. Their help has been great and we miss them already.
She had some chicken soup and a little pudding but her digestive system is not back in full swing yet. They took her PCA morphine "patient controlled analgesia" away this afternoon, and the pain got a little ahead of her. She got a shot of morphine that brought it under control, but it makes us realize how much she is coping.
After dinner we had a celebrity visit from Murdena Mills and Dr. Marty Maron from Tufts Medical Center. We were referred to Tufts after the original diagnosis of HCM and Dr. Maron directed her care up until the time he determined that a transplant would be sooner rather than later. That proved to be a difficult and timely decision, as her old heart began to give out very quickly after the referral to Children's. He and Murdena braved the snow and rush hour traffic to come across town to visit, and Emily and her parents were thrilled by the visit. They told her how her courage has been an inspiration to them and to many other people. Thanks, Dr. Marty!
The day is ending with more meds being added to suppress her immune system, another walk, and a much deserved rest. Although she is exhausted, you can see by the picture that her cheeks and lips are rosier than they've been for a long time as her new heart pumps more blood around than she has ever been used to before.