Eve’s Trip Plans
We have a lot of people asking what’s next for Eve. A lot has happened in the past few weeks, so I’ll run you up to speed on what we know.
Three weeks ago, Eve was retaining fluid around her heart. She was having trouble eating, and you could see retraction in her stomach when she was breathing. This prompted our Cardiologist to admit her to the 5A unit of the University of Minnesota Medical Center, Fairview, a place we have become very familiar. The doctors were able to monitor her closely, and adjust her current set of medications, while adding another diuretic to help her get rid of the fluid build-up.
While there, we made the decision to try to get a transfer for her surgery at Children’s Hospital Boston. Eve has a window of 2-4 weeks to get a procedure done. She looks completely normal, and it is very hard to tell she has congenital heart failure. This obviously is erased when you see the number of medications we give to her, on average, four times a day. We track and triple check everything. There’s a whiteboard in our kitchen dedicated to this schedule, and it’s constantly changing.
If you ever find yourself in need for a top notch Pediatric Cardiologist, Dr. Lazaros K. Kochilas is above exceptional. He’s been very thorough in Eve’s care, and has the patience to answer all of our questions, which we have many more than normal. We would refer him to any friend with this type of need.
So here we are, leaving for Boston on Tuesday, April 7th. We’ll be out in Boston for around 2 weeks. We’re not 100% clear what is going to happen, but we’re positive this is the right decision for Eve. I’ll be updating everyone on her progress in this blog. We appreciate all the good thoughts and prayers coming to Eve. It all helps.
