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.

9 comments:

S said...

My thoughts and prayers are with you.
I just happened to be blog surfing and saw your site. Good luck to Emily and best wishes, Suzanne

m.wynn said...

wow Emily. This is so awesome. I check this blog like 20 times a day and I'm really inspired by everything you've had to endure. As always, awesome job and best of luck with everything
~Carly

Kate Lusenhop said...

Another great day for Emily and her team--many steps forward today...
Aunt Susie is DEFINITELY the one you want when things are tough--we're all lucky she's in our lives!

Coach Kristi said...

I was able to share Emily's story with the Gatorades tonight, and the cheers came almost immediately. Em - your swimmers hugged each other and were so happy to hear the news. We all miss you dearly and every bit of news on this blog gets us closer to your return. Keep up the good work. Your are an inspiration to every person around you.
Love,
Coach Kristi

jag said...

Hey Emily--from the best (and favorite) student to the best patient.
And now, you are the best teacher for so many.
I am captivated by your story and so proud of you. You are the best.
My prayers continue for you and your family.
Bob & Deb--my hats off to you, too. You guys deserve the best, but then that's why you have Emily.

Beth said...

Emily,
My big sister Jolene has kept me entertained through out the years with stories of you, and sent me your website address so I could follow along with your progress. I'm so happy for you - you'll be leaving the physical therapists in the dust on your walks (& perhaps Jolene in the dust on those trails?) before too much longer. You are quite the inspiration, young lady!
Beth,
charter member of the Colorado Emily Fan Club

Michael Katz | Blue Penguin said...

Hi guys,
We're finally on board with this blog. We are so thrilled for all of you. Things went so quickly and so well! You must all be living right.
Emily, the kids can't believe that the girl they played minature golf with and hung out with this summer just had a heart transplant.
We want to come visit when you are ready - will need to be on a weekend.
Keep up the hard work so you can tire out those therapists.
We're thinking of you.
Love,
Linda K

Bonan said...

I hope you all three are getting some much deserved rest. I did not sleep well last night not uncommon for me these days, but I thought of you all through the night and prayed and marveled at all you have endured. Very proud of you and thrilled with your progress todate. You Emily and your family are an inspiration to so many. Stay strong. Martha and family

Jolene said...

Is that good color and smile because Dr. Marty is there?