Can't catch a break.

We were able to leave on a pass yesterday! Whoop! We got home shortly after 5 pm and began unpacking/wiping everything down we brought back. Emerson couldn't wipe the smile off his face. He wanted to be toured around the entire house and made sure we took him into each room. It felt good to be home. We had a good sleep all in our own beds and woke up today in a good mood. 

(All smiles before finding out his lines were blocked)

This morning we had to make a trip back to the hospital to draw a CBC off his Broviak line. We were also getting to test flushing his lines on our own so we can do it at home. The nurse came and tried to draw off both ports unsuccessfully .. They both flushed with a little resistance but we weren't able to draw off anything, not even the saline we had just flushed in. This is making them suspect that he has formed a fibrin flap over the ports that opens when fluid is pushed through but gets sucked against the opening when you try to draw off. We are going to administer the TPA into both ports today and let it sit for 24hrs. We were able to talk them out of calling lab down to poke him for the CBC and wait to try again tomorrow. I'm feeling a bit disheartened because I thought the Broviak line was going to solve all of our access issues and save him the agony of trying to get blood by poking him each time.. I don't understand why nothing can just go easily for us.. I just want one thing to go right..

(E- "I wanna go home") 

(Sick of these lunch dates)

I'm praying we find a donor match quickly because the wait so far has been extremely draining and we are running on fumes.. I just want this to be over and it scares me to know that we haven't even begun the hardest part. 

Needing positive thoughts sent our way that his lines are patent tomorrow and they can draw the blood work off of them.. My poor little babe just wants to be home where people aren't poking and prodding him 24/7.. 

D