Eve of One Week Home

Genevieve had an unexpected trip to her surgeon this weekend and a follow up today. All is well now, and the prognosis continues to be good. Her pesky tube sutures looked angry on Satruday, so Hillary was on stand by to see someone from the surgical team at Children's Hospital ER. Genevieve never saw a surgeon, they were literally unavailable in a heart transplant procedure on a 5 month old boy that lasted the better of 18 hours. After waiting for 5 hours, sutures were removed by an ER Doctor with the consideration that Hillary would bring Genevieve back today. Directives were followed today and Genevieve returned to the office of her cardiologist, where the surgeon met her. What was heartwarming was that many of the medical team had to do double takes when seeing Genevieve, visually...she is stunning.

Pain management is a constant consideration...home care requires that we stay ahead of what we anticipate to be the onset of pain and fatigue. Dr. Christian did lower her lasix dosage to once a day, she is down to 9 syringes of meds a day.

Meds are never a good time -

Genevieve sat next to numerous children today in the waiting room, reminders that while Genevieve's heart needed many repairs - God did indeed spare her.

A friend of mine in Alabama tells me that children like Genevieve who face incredible challenges as young children go on to be great warriors and accomplish great feats as adults. It was a good day to hear that.

A large lesson in the past 48 hours is that Genevieve will never have just a routine doctor's appointment. She will forever have special considerations, even to remove some pesky sutures she is now on antibiotics.