Katja’s recovery has been slow and smooth. Which is just the way we want it 😉

Her stamina is improving weekly. The first days after surgery included multiple naps, then getting to lunch was difficult. Now she can make it to about 6pm before she’s ready for bed. The amazing thing about the human body is it heals so quickly in children. Katja’s external scar looks amazing. All her bonding glue is off and with it, most of her scabs. Externally she looks better than before. They did an amazing job on her scar revision.

Internal is always a different story. Katja’s heart was in failure for over 7 months. She was in a 12hr surgery and spent 4hrs on Bypass. That’s rough. Her heart is beaten, bruised, swollen and sore. It will take months to recover.

The early signs of improvement are starting to show! Her Echo this week at Seattle Children’s (Yes, we are finally back home!) showed significant reduction in her LV. Before surgery (lower right photo) you can barely see her RV it’s so enlarged. You can see her Echo immediately after surgery (yellow upper right photo) that it’s still pretty large but starting to shrink. This week’s Echo (left photo) you can actually see her RV and her LV is only slightly bigger. That’s a huge improvement at 4 weeks Post-Op!

Her EKG this week is still showing some signs of swelling and stress on her heart but even that is improving. She’s definitely getting better but Open Heart Surgery recovery is a long road. She’s still taking lots of medication to control clotting and her blood pressure and we are seeing signs of her PPC (Chorea) returning. Which means Neurology is now involved and hoping to follow her closely over the next few months.

It’s been rough for us. As any heart parent will tell you, these surgeries trigger a PTSD response. We live Echo to Echo. Surgery to surgery. Appointment to appointment. We are exhausted, stressed out and definitely struggling. We try to protect the other 4 kids from all the “ugly side” of Katja’s medical conditions but it’s very hard to be home, doing normal daily things, trying to keep a routine, knowing we haven’t even begun to process the last month ourselves.

The news so far is super optimistic. Everyone thinks we have many years to the next surgery (10+) or that any intervention can be done via a Cath procedure. However as heart parents, we know, there are zero guarantees. We hope and pray Katja can live a normal happy life but this broken mended beautiful little heart will be hers for life and it will always require care and attention.