04 June 2014
Wednesday Update: Post Op Day 6
Not sure how I've managed to not update this more frequently... That was definitely one of my goals heading into this experience! I'll have to be sure to do a complete report once we're home and I have a solid block of time to dedicate to documenting! We are finally back in Luke's room following his sedated echo this afternoon! He did great with the sedation and we just heard the results of the echo... A "patch margin ASD" remains, but should heal on its own in time and his valve and overall heart function look fine! His surgeon was one of the doctors reviewing the echo today and he was pleased with the results!
A few fun things have happened for us today... Luke got his official "heart" pillow from the hospital, indicating that he had open heart surgery here, he was chosen for a photoshoot by the hospital's professional photographer and we are hopeful that they will use him on their website and / or Facebook page sometime soon and I was able to make a "Beads Of My Heart" bracelet to represent all of the different procedures and events that we've been through with Luke's heart journey. I ended up with a string of beads too long for a bracelet so it may become a necklace or a bracelet that I double wrap... not completely sure, but either way, here is a listing of the meanings of each of the beads I was able to pick out...
Hospital Admission (NICU, Observation for Laryngomalacia, RSV, Heart Catheterization, Bronchiolitis, Pneumonia and Open Hear Surgery)
Bath time in the hospital
New Diagnosis (Subcutaneous Emphasema)
Holiday in the Hospital (Christmas in the NICU)
New Baby (with a Congenital Heart Defect)
Visit to the Prouty Garden while admitted to Boston Children's
Visit to the Playroom while admitted to Boston Children's
Visit to the Resource Room while admitted to Boston Children's (for parent coffee hour)
Out of Bed!!
Chest Tube Removal
Wound Dressing Change
EEG (at Cleveland Clinic)
NG Tube (while in NICU at Cleveland Clinic)
Operating Room / Surgery
Pacing Wires / Lines Removed