One day all this will seem like a distant memory washed up on shore from a long hard journey at sea.
I am in his hospital room rocking him in his rocking chair while he has his first tube feeding. Reality has hit me square in the face and I am broken. Today has not been a good day. My poor sweet boy has testicles the size of a baseball and fluid filling his abdomen, he is receiving a transfusion of albumin and diuretics to help with the fluid.
He will have surgery early next week on his testicles hopefully, and depending on what his bilirubin level is at we may be headed straight to Toronto (sick kids) for liver transplant assessment.
I have used up all my strength and tears it seems. I miss Sydney, I miss my home, my husband my life. This isn’t how I thought it would be.
I am scared of what tomorrow holds.
Thankfully he can still breastfeed, and his tube feedings are my breast milk fortified with a specialized formula. All his meds can be administered by his NG tube too, which is a blessing as he threw up his meds and his milk all the time.
i am pleading with God to hold him close, guide the doctors in their decisions and watch over him as he is such a special boy, who has already taught us so many things. He truly is full of goodness.
Please pray for Declan and our family as the next few months will have their challenges, but in the end we are praying to have a healthy boy with scars that tell a story, a message of hope, grace and a life ahead of him filled with love.