Glenn-tan. I'm stealing this from my heart friend Lori who also has a daughter with HLHS, and she is a Fontan take down too. She calls Rosie a Glenn-tan. So that's our new word.
Caelen had a decent night. He was sleeping comfortably until around 4 and then decided he wasn't having all of this intubation, chest tubes, IV's, etc. They gave him a lot of rescue doses of sedatives and decided to add another drip to keep him calm. It took a while to kick in and he gave the morning nurses quite a workout.
The plan for today is to just let him heal and rest. His oxygen is a little low, 73, but his blood gasses are good and he's even slightly over ventilated. This could be from the plastic bronchitis still, but he is being aggressively suctioned and they are pulling a lot of mucus and junk out of his lungs. It could also be from the trauma and drama of yesterday. So rest today is the best thing for him.
I wanted to share a story with you from last night. As we were waiting for the 2nd round of the cath and getting very mad at God, a father and his 5 year old daughter (who is a patient) walked by and said, "you look like you need a friend." He then went on to tell us how the doctors told him that his daughter Emma wouldn't make it, and when she did, that she'd never walk or talk. We've seen her walking the halls for days now and let me tell you, she can walk and talk. She told us funny stories and then went back to her room to rest. Then they came back again with 2 plastic spider rings, one for mom and one for me. Emma told us that they are for good luck. So mom and I have been wearing them since last night. But Emma also sat and told us 10 jokes. And she counted each one. They were exactly what we needed at that very moment in time.
Just as we were getting mad and cursing God for letting this happen to Caelen, he sent 2 angels to come and take care of us. It was at that point that I knew that Caelen would be ok. So although we can't understand God's plan for Caelen, I know He has one. I realize now that it's not my job to question God. My job is to be Caelen's mom and do the best that I can. God will take care of the rest.
Thanks again for the prayers. Caelen is still critical, but I believe that he will overcome this. Please keep praying.