Round 2, Day 6

Lincoln is homesick! He keeps asking to go downstairs to lay on the couch. It’s the first time he’s cried this whole trip. Scott and I are now staying at the bedside because the hotels are all booked and the Ronald McDonald house is full. It’s okay because I’m not sure I could handle being here without scott when Lincoln gets upset. He’s been touching his midline incision saying “ouchie, broken” it’s just about enough to break your heart.
Lincolns heart rate is low but not low enough to require a pace maker. Lincoln has always had a low heart rate because of the medications he was on but it never dawned on me that it could be dangerous. His pacing wires are still in place and I’m really not in a rush to remove them. It’s so scary not to have the option of turning them on anymore . We are looking forward to removing the chest tube today. It will make walks easier.
Lincoln loves going for walks around the unit. He leaves little toys out front of other kids doors and says “sharing mom” He really is a sweet kid. So many kids are on Ecmo waiting for transplant. The kid that didn’t make it in the PICU the other night donated all of his organs and I was so hopeful one of these kiddos would be one of the lucky ones to get his heart. They weren’t. Everyday the kids take a walk by Lincoln’s room with Ecmo set up rolling behind them. One little girl walks around with a fart machine and when she’s in front of Lincoln’s room she sets it off. It’s actually hilarious. Hoping she gets her gift soon. 
I’m happy to say if things are looking good the next couple of days we’ll probably get out of here this week. I’m terrified because he’s on new meds, and we can’t hold him certain ways. He keeps saying “hold you” (meaning hold me) and “want you” but we can’t pick him up under his arms and hold him over our shoulder for a while. Traveling is going to be challenging. Scott and I will have to be very careful. Hopefully the people around us are patient with us. 
So today is big: getting rid of his chest tube, taking out pacing wire and taking his D20 off. Let’s go Lincoln!