Tiredness

I'm going to have to just say that I'm disappointed. I'm sad that I did not take Joey home, and I'm sad that Joey may have to endure another surgery, when all I want to do is take my little boy home to be a family unit.  I am mourning this loss.  I am sad that Joey may have to receive a trach, and that I may not get to hear his voice for a while and it will restrict his movement. I'm scared of the surgery and the recovery process.  I don't want to walk through all this. I definitely don't want to walk through all of this as the coronavirus is around. I am mourning all of these things.  I am trying to rest on the promise and hope of Christ-that the peace of God does surpass all understanding and that God's ways are not my ways. God's timing is not my timing.  It is really hard.

After watching Joey crash and burn twice now in the past week, I am traumatized. The things a parent will see in the NICU will burn and haunt your mind.  I've asked God to heal Joey's lungs, and sometimes I wonder if a trach is the way for Joey's lungs to heal.  I want God's voice to be abundantly clear to me as to what route we need to go with for him to breathe restfully. Joey has a lot of things going on for him that are truly positive. If this is what he needs to keep on going then, so be it. This is one of the last hurdles for a while.  If he gets sick, maybe a trach will be a way for him to breathe easier when he is having difficulty in the future.

Joey is back on the hospital equipment with his CPAP, and he's rock solid with that thing on his face. The home equipment just does not function as well as the hospital grade equipment.  I'm fearful that if he gets his trach and we are working with the home equipment, we're going to run into the same exact issue we had with not providing enough support.