Home with Worms Attached

Cole calls his chest tubes "wooms that hoot me" (worms that hurt me).

We had the option yesterday after Dr. Watts came to Cole's room to leave today with his chest tubes still in or stay in the hospital and hope by Monday the fluid output was lower and even then it could be even longer before we left.
After going back and forth what was best for Cole we chose to go home today and do the chest tube draining and care at home, and cleaning of incision, and medications.
Cole's little spirit the last two days was becoming more and more broken. All he says is "I go home." He is scared to death of anyone who comes in the room. So we pray that all goes well and that fluid amounts are down by Monday so maybe Tuesday we can take Cole in and they will give him something for pain and a little sedation to take the tubes out and stitch him up.
The right chest tube is still putting out a lot of fluid but the left one is borderline ready to come out. We didn't want to put Cole through this twice.
With the Fontan surgery this kind of drainage can go on for some time. One of our risks being at home is the chest tube gets pulled out and we have to rush him in because fluid will gather around his lungs and he can't breathe.
Some friends of ours were just re-admitted with their little boy for this. He is the same age as Cole. Same procedure. Same story. They went home with chest tubes because the stay was dragging because of the amount of fluid draining and one got pulled out at home. They had to rush him to the hospital because he couldn't breathe and it showed so much fluid still around his lungs.

So, we just got everything in the house and getting started on the care at home part. We wanted to let everyone know Cole is home but literally not without strings attached. He seems more relaxed already.

I don't have a lot of detail yet because I haven't slept, well I can't remember when. I will be getting a light hearted blog entry after getting caught up. Good Cole hospital humor:)

Welcome Home Cole Bear! We love you so much. I think this was the best birthday gift Ava could ask for! Cole coming home safe!