Katja seems to be a little better. We had an ER visit  last week after she spiked multiple high fevers a week apart. Her Cardiology team was worried about endocarditis but it ended up being back to back viruses (229E and Rhino). We still decided on doing a culture to rule a heart infection out. Endocarditis cultures so far are negative. She’s still pretty tired and struggling to eat often enough that she doesn’t lose weight. We are up to 47.5lbs.

Boston gave us surgery dates! We’ll be leaving around June 18/19. Her Pre-op appt is the 20th, CT scan of her valve is the 21st. We’ll have the 22nd to sightsee and

Surgery is set for June 23rd.  (Just 3 days shy of her 5 year mark)

We’ll most likely be there until mid July.

These are our “Unicorn Dates”. What we hope she can make it to, to avoid as much disruption to her schooling and the other kids as possible. However her team has called in dates as early as April 1st. So if she can’t make it to June, we leave ASAP.

Still lots of coordination on hospital housing, hotels, flights, the other kids (Katja is 1 of 5 for us) etc. Honestly we are stretched pretty thin these days. It takes hours and hours of phone calls to arrange all this. Not to mention the constant updates between 2 teams, her school, family and friends. So a majority of her updates will now be here. I can’t promise daily blogs but I will keep everyone posted.