Nicky and Sarah came home from the hospital Saturday afternoon. The Home Health Team met them at home to help Sarah understand how to best care for Nicky. He has a little back pack that holds the pump and the special formula that runs through his nose directly to his small intestine. Again, bypassing his stomach. Which is why he is always hungry. I was video chatting with them last night before bed and saw Nicky in the background trying to open the fridge (see pictures below.) Very sad. The good news is that his body is receiving nourishment, even if he doesn't feel it.
His tube started to slip out yesterday, Sarah had made a mark on the tube by his nose, and found it behind his ear. So they are scheduling to go in and fix it. If the tube is too high, it could drain formula to his stomach...which he may expel. He is on a steroid and a reflux medicine. Evidently EE is quite painful and the doctor said he probably has been in pain since birth. Which would explain his incredibly high pain tolerance. He busted his finger yesterday and didn't even flinch.
Some of you have encouraged me to go home. I wish I were just on a personal retreat and could leave to go be with my family, but Sarah and I have talked about this together and what she has told me is, "When I need you to come home, I will tell you to get home, but I am able to care for our family."
She is an amazing woman of God. We also are blessed to have many GREAT friends who have cared for Daniel and Sarah as she cares for Nick. Sarah told me, "Satan would love nothing more than for you to leave the road and the ministry that God has called you to." And yes, my first ministry is to my family, and right now, I'm doing my best to earn a living for them. I have an opportunity to live a life of faith in God's sovereignty and trust in His perfect plan before my audience every night as I praise Him for who He is, regardless of my circumstances. This is a trial for us, and while my being home would provide emotional support for us all, my wife relies on God for her stability and He sustains her. Bottom line, we have prayed through tears, including my staying out or coming home and we believe that right now, God would have me remain on the road.
But I'm counting down the days ;)