1/17/14
It's the New Year!

Since Thanksgiving Nicole has continued to press forward in her recovery. Christmas was a celebration with more meaning than ever before.  Nicole had a blast making gingerbread houses with her sister and friends.

On the Medical front, she has had her first follow-up with the cardiac "electricians" as they call themselves.  She really likes her electrophysiology doctor: Doctor Salerno, and his nurse Jenny.  The follow-up showed that the ICD has only had to pace her heart less than 1% of the time since her last test a month ago.  They feel this is normal, and not a problem.  Her heart has not had another "event" which would have required the more intense "shock".  All good stuff.

Her medication regimen is stable, and Nicole is pretty independent in managing and monitoring those.  She has really matured through all this.  She has taken responsibility for her weight as well, and increased by more than 15 pounds since her discharge.  The cardiologists and her primary care doctor are so pleased by this.  And of course Nicole loves the opportunity to shop for new clothes.  She has adjusted well to the surgical scar on her chest and doesn't seem to be shy about it at all.  I'm so proud of her.

The Neuropsychological assessment was completed, along with a 4 hour follow-up and feedback session.  Amazingly they are finding no apparent issues from the cardiac arrest!  We kind of thought that was the case but it is so good to have validation of that.  Nicole was pleased.  As part of this process, she was invited to participate in a study of the effect of core temperature cooling on post-arrest cognitive functioning.  While they don't have all the data collected yet, the doctors told us that unlike the bulk of the patients who have needed the core temperature cooling Nicole appears to be unscathed.  There is some concern over possible visual field issues, but the source of those is not clear.  We are following up with Children's on this issue.

Nicole has continued with the tutor, and works on catching up with her peers.  We met together with the tutor and her school counselor to discuss return to school and grading options as she reintegrates.  After all the discussions, it looks like she will complete this semester at home and return to school at the start of next semester: the final week of January.  She was excited to pick out a wheeled backpack for her school work, as she cannot carry the typical backpack.  I wonder what it will be like for her to go back to school after 3 months away...

Probably the most important progress for her is that she has returned to swimming!  A couple weeks ago she swam at the pool while visiting her grandparents, and then again she has been to the Y to play with me and her sister.  She is avoiding strokes like butterfly and freestyle that move her arm over her shoulder to minimize risk of creating problems with the device lead.  The doctor has recommended this restriction... However, just being back in the water has brought the biggest smile to her face.

I know we are not out of the woods, and will have many new hurdles to navigate in the coming months and years.  However, I cannot express how thankful I am to have Nicole with us, and able to dance again with her sister like the crazy girl she is!  And how thankful I am for the thoughts and prayers of so many people.  Thank you!