Day 51

Thank you Lord for all that you have given us. Everyday is a blessing with Liam. His strength and his will to fight is amazing. Liam had an episode last night where he dropped his heart rate and his oxygen along with his vent settings. Lets just say he was super pissed and clamped down. He pulled out of it pretty quickly thanks to the team that was on. Thank you Nurse Molly!! He wants to keep things interesting that's for sure.
Chest X-ray a little hazier then yesterday's, hopefully it's just because they are making his lungs work harder with the vent settings being low. His goal today was pulmonary work. Nurse Jenna did some percussion on his chest hoping to improve his lungs in that manner and she also laid him in the prone position to see if that helps as well. Lets just say he was a crappy patty with both of those ideas but he does settle out pretty easy and he was able to be proned for 2 hours earlier and 4 hours later. Lets just hope it helped and his chest X-ray looks better tomorrow.
His feeds are holding steady at 5cc and hour but they want to advance him up to see if he tolerates. That is a concern as well. You never think of eating to be an issue right? The last few times he has gone up on his feeds his belly gets hard and distended, and they have to quit. hopefully we just have to get his bowels moving.
Liam is going to get his weekly 2-d echo tomorrow to check his pulmonary veins. Pray they are still at a good gradient. This always causes huge anxiety for us. With everything else going on we seemed to forget that Liam needs his pulmonary veins to be good ALWAYS!
The plan is to see how he does in the next week. In regards to his feeds, his surgeon said early next week he should have an abdominal series to check his intestines. Hetertaxy patients experience complications with them being twisted or having a kink in them. Hopefully that's not Liam's case. He has had his fair share of complications.

Thank you for all the food that you have been sending us. Chris and i have been eating so good. Special thank you to Amy Haug Boccieri for organizing all if it. Xoxo Also to the staff at St. Elizabeth maternal fetal medicine for thinking of us and sending us too! All of you are amazing.

His nurse today and yesterday was Jenna and we love her along with respiratory Kelly. I have so much fun with them. I get to have girl conversations and it is great to talk about other things beside medicine I have said it before but the people that work at this hospital are wonderful. I enjoy all of them.
Prayers always. Xoxo