Fridays are not Eli's favorite.

Today was a very rough day for Eli. Probably one of the tougher days since his emergency shunt revision back in July. You know, at 17 days old when his shunt clotted. Ya that one. I know, the status updates every day make all the past events seem irrelevant. Today was a day with no end it seemed like. For a quick recap the day kind of went like this. 

My morning visit was ok. They had thrown at me that Eli needed an extensive brain MRI. Which was supposed to be around 1. This was to take an scan of his brain for any nerological issues he may have. We've had some concerns. Well that quickly turned into being rescheduled to Wednesday. I went to work and called a few times to see how he was. I left an epic training early to go back and check on him and get an update. Call it a mothers instinct but I managed to walk myself into another episode like last week. Many people hoarding his room and doing things I know were not on his schedule for today. Things quickly escalated but settled out. I managed to go get food and go back to work. I came back and that's when Eli took his heartbreaking turn. His body got very cold. ICE COLD was the description. The profusion of blood to his body was very poor. His lungs were taking on a load that his body was having a hard time balancing. His heart function was severely depressed and he was getting sicker by the minute. His pulses were hard to read and getting an arterial line in to measure his blood pressure was very difficult. At this point Eli's lactic acid had sky rocketed into a 13.8 level. They weren't very optimistic at this point that Eli was going to recover on his own without the heart/lung machine. With his poor profusion, opening him back up and putting him on the bypass was our best option. We needed to get one more lactic level before we made this decision. In the midst of all of this, Eli's surgeon called the transplant team and made them aware of how critical Eli was and that we need to get things moving ASAP. The lactic acid trended down to 7! It was a huge relief. Bypass was taken off the table and Eli began to recover slowly. His body warmed up and his coloring came back. His pressures were stable and he began to make progress. As I sit here and type this, his levels are stable and where they want him to be for the next few days. Keeping him comfortable and maintain his pressures until Wednesday. His MRI of his brain will tell us his status for a heart transplant. Wait. What?! Eli's brain function has to be in good condition in order to get a new heart. Crazy huh? Very. But that's where we are. 

So many new things and literally taking each day one day, at a time. We have too. Eli has his own agenda. He basically tells me what my daily routine is. For example. 

He tells me where to sleep, Ronald McDonald or his pod. 

He tells me when I can go eat, when his saturations are between 75-90. 

He tells me when I can go to work, when I need to leave work and when I just shouldn't go at all. 

He tells me when I can take a picture which is when he's feeling ok.

He tells me to put away my phone when he's not feeling ok. 

But here's the thing.

I tell Eli, I will sleep wherever he needs me. 

I tell Eli, I will eat when it's necessary. 

I tell Eli that I have the best job in the world and the most supportive coworkers anyone could ever ask for. 

I tell Eli he's gonna hate me when he's older for all the pics I do take. 

I tell Eli that even at his sickest, he's the the most beautiful boy I know. 

And most importantly I tell Eli that we will never, ever, give up on him. 

So for tonight I leave with you this picture. His eyes tell his story. So pay attention. He may see something we don't.