STATUS 1A!

So the covid test never came back until after midnight.  Apparently the covid machine in the lab at Morgan Stanley broke and they had to send Ethan's test all the way to Cornell for testing. We also found out that they are keeping the covid positive children at a different hospital.  That makes me feel so much better.  The staff here said it keeps the kids waiting for transplants and the kids who have recently received a transplant safe.  There is not a whole lot of co-mingling happening at the hospital with the other parents or patients.  Of course, that is fine by Ethan and I.

You should have seen us trying to get all our stuff here in one trip. We basically had our laptops, electronics, clothes, laundry supplies (I am so thankful I ordered the Tru Earth, eco-friendly laundry strips.  They don't take up much room and come in a small cardboard sleeve.  They work well too.) Then our clothes, pillow and lets not forget the fan.  Ethan also brought his play station, steering wheel and foot pedals.  When we leave, it will be done with a few trips.

The Uber driver went by the entrance to the hospital and then pulls up a ways down the road.  Most of the Uber drivers, english is not first, second or in some cases third language. "this ok?" he asked me? Knowing that I had like 10 heavy bags to carry, I said "No".  He let out a heavy sigh.  He then looks in his mirror and throws the vehicle in reverse and steps on the gas. We went back a ways and he says "This ok?" It actually was ok, we got out and stumbled our way into the lobby.  I almost asked some lady if I could have her kids wheel chair so I could wheel the stuff instead of carry it. My broken elbow arm was getting weak. We checked in, the guard took the horrible visitor badge picture, and somehow got to the 6th floor.  We both had our hands full.  Ethan was holding the elevator door with his foot, trying not to get his IV line stuck in the door. Typical Di iulio Shit Show.

The man behind the desk on the 6 th floor took pity on us.  Either that or he thought I was going to pass out.  He helped us to Ethan's room. I was so thankful for his kindness.

Our room is a single.  The team will only put the transplant kids in a single because their immune system is not as good and can pick up more stuff.  Less people around....less chance of illness. The view is very similar to the one we had before because it is one room over.

Ethan spent a bit of time connecting his play station to the TV. He had to get the sound to go through the tv and not the bed remote. He figured out how to hook it all up and then was happy because he got to play his games.

Ethan stood in for his first time in "Rounds" which is a team of people that come around and discuss his case, make a plan for care as well as make sure all of our questions are answered.  His doctor today was the same doctor he had last week.  They rotate so we don't know which one we will get.  Ethan likes this doctor, however, Ethan said he does miss his Rochester cardiologist. 

Ethan attended class and I did some work.  We were interrupted several times for base lines, disconnect and reconnect medication lines, flushing, blood draws, vitals.  

Ethan's cardiology nurse dropped off the paperwork that says we are officially listed at 1A. Basically it will depend on the blood type, size of the donor and location of the donor.  If there are two kids with the same stats, then it defaults to the kid that has been listed at status 1 A the longest.

Then Alison popped by.  We met her last week. I can describe Alison as a burst of smiles and empathy that travels around room to room and everyone likes her. What a job!  She has an outgoing personality that is able to work her way into everyone's heart.  Ethan met her when he came back in October for his evaluation. Her job is to make sure that Ethan doesn't get bored. She also saw us a few times when we were here last week. Ethan's other nurses popped by and said hello. He is becoming a celebrity here.

Thank you for all the thoughts, texts, emails and everyone that has been reaching out.