11/7/13

Nicole is home!  She is loving it to be in a familiar environment without all the monitors, IV's and wires.  She is not yet able to navigate the stairs but can get around the house with a little assistance.

Her medications are somewhat overwhelming.  She gave me ideas about creating a tracking sheet for her many meds: some daily, some twice daily, some three times daily, some as needed (not to exceed a certain amount), and several with dosing changes after a certain number of days.  Holy Mackerel! We think we have a pretty good checklist created now, so between the checklist and setting reminder alarms on my phone we should be able to stay on top of her medication regimen.

Her sister is beyond ecstatic to have Nicole home; she said it was scary to see her in the hospital.  She is a trooper too and made a cool welcome-home banner for her.

It is exciting to see her progress and her confidence.  She has been one who really struggled with needles but now to see her help with dressing changes and checking her sutures on her incisions in such a matter-of-fact way is inspiring.

The treatment teams are closely monitoring her blood work, heart, and device function.  We will be getting a wireless interface for her ICD (implanted cardiac defibrillator) in the coming week.  It will use the land-line communicate on demand to the cardiac device team to keep them/us posted about Nicole's cardiac status.  They will not adjust Nicole's device remotely, however, as they want to make sure she is in a medical environment when adjustments are made in the event of something going awry.  It is comforting to know that her status will be viewed between visits, though.

The Education team at Children's has been invaluable.  Nicole was not sufficiently stabilized to begin school work at the hospital, but the education team has been closely involved in her progress and communicating a detailed plan with Nicole's school counselor.  The treatment team have proposed a plan to the counselor involving individualized assistance at home to help her get up to speed.  The team has also decided she will need neuropsychological assessment to inform her return to school plan (scheduled in several weeks to allow her to further recover).  I had not realized such support is available from the Everett School District; very nice!