Well, we are heading home from ACH tomorrow. We met with many people today exploring options for Parke. The consensus was that there is no viable option for "fixing" him. The surgical team and the cardiologists met today on his case, and our doctor expressed to us (with tears) that less than 1/4 of them were in favor of moving forward with anything other than palliative/comfort care. We were sad, but also thankful for clear direction. We know exactly where Parke is going, and he is beating all sorts of odds by being here and this healthy. We will take each day we are given and celebrate...and give glory to God for allowing Parke to bathe us with his sweet love and presence. He is truly a gift to our family, and I am forever changed by being his mommy.
So, tomorrow we will return home. We will continue to do what we were doing before...loving him and acting as normal as possible. We will bring Landry and Collier back home and be a family. We will take each day as it comes and move forward caring for him and keeping him comfortable.
Parke is still eating and breathing on his own. He is showing internal signs of failure with a few leaky valves, low pump function, enlarged heart, and a few more, but outward he still looks totally normal.
I don't know how to express the love I have for Parke and the peace I feel knowing that he will not suffer in this lifetime. He has not even been poked with an IV, and I am so thankful for that. He is so very loved by many, and his short presence on this earth has already been miraculous.
We were given some information today that I am confident Parke will decide to beat. One of the surgeons we met with told us that there is a 0% chance that Parke will live another 3 weeks. I could feel his ears perk up and say, really?! :) I hope he can continue to defy the odds, but I pray continuously for God's will to be done. In his perfect timing, Parke will be fully healed.
I've been keeping up with sweet Parke's story and am just so heartbroken for your family. He is a special little boy and so blessed to have you as his mommy. I pray for healing and comfort for him and for your family!
ReplyDelete