3/25

18 weeks. That is how long it has been. Longest, most eventful 4 1/2 months of my life. 15 weeks 5 days in ICU. Well that was a ride I would never like to go on again. We are moving forward. Sometimes I feel like we are playing dodgeball with life. We just have to try and not get hit.

Ethan and I were excited but cautious today.  We laughed about how anytime there is traveling involved we turn into the traveling shit show. Things just seem to go wrong or happen that aren’t as smooth as they could be.

Many people came to say goodbye today. It was so sweet! We vow to visit when we come back to clinic. 

I packed everything up for our 11:45 am departure. 10 minutes prior to departure time, we get a call saying our ride has been delayed until 2:00 pm. Ugh! 

Ethan’s biggest concern is if there is a TV in the room.  If we will be close to chipotle (we will) or if they have ice water like the ice water at the hospital. Reasonable concerns.

Around 1:45 I get a call from our social worker to come to her office. This probably can’t be good. As I walked to her office, I thought that she probably had to tel me our ride was cancelled and she did t want to do it over the phone OR in front of a child due to not knowing how I would react. I walked in her office and she shut the door. I wanted to tell her that I already knew.

“We cancelled your ride. The facility is requesting atypical information regarding a contract with the insurance company. We aren’t exactly sure what they are doing because we have got all the approvals on our end with insurance and resent the documentation of it. I am so sorry.”

I looked at this woman sitting across from me. Big beautiful brown eyes full of empathy and frustration were staring at me. Since I already knew she was going to tell me I decided my reaction was going to be under my control. How would I like to give this information to someone? 

I looked at her. “You know, at one point, I wasn’t sure if I was going to walk out of this building with my son. We have made it through the toughest several months of our lives. This isn’t going to get us down. It sucks but it’s not the end of the world. But I will tell you....we will not have Ethan hooked back up to telemetry.  We removed the stickers already and will not be putting them back on.”

She looked at me. She was expecting a temper tantrum.  What would that solve? How would that help? I just don’t feel like letting myself get upset about something beyond our control.  This was no ones fault here. In fact, these people have been bending over backwards to make sure we have all the medications, appointments and rides we need. They have been fantastic about communicating and also making sure everything was all set to avoid a situation like this. They tried so hard.

One of our cardiologists was talking to me and she was so mad for us. She had put in calls to the medical director of the facility already trying to fight for us.

I walked back to the room to break the news to Ethan. He was undoubtably upset and disappointed. Right after I broke him the news, a nurse that we have never had before came in and told us we had to move out of our room because they needed it for an epileptic patient.  They moved us from 615 to 603. So in addition to is having to pack all of our stuff up, we then had to switch rooms and unpack our things. Welcome to the shit show.

It is a pain in the ass. We have to cancel our first dialysis appointment.  We have to get on the schedule for the morning at the hospital before we leave. That’s a 4 hour ordeal. Ideally on a Friday it should be later in the day since the next one isn’t until Monday. 

Turns out, needs to be a single case agreement between the insurance company to the facility because it is out of network. The facility says it’s out of network and needs this. The insurance company says it’s in network and doesn’t need this. Literally this piece of paper is making us stagnant. This piece of paper is keeping Ethan away from the therapy he needs. He is caught in the middle of this silly war that not one side will step back and say.....let’s do this a different way and get this kid help. It’s frustrating. It’s a let down. After everyone here has worked so hard to make sure everything goes smoothly, this is a slap in their face too.

Man, I didn’t know what a shit show this would be. I think shit show was an understatement. I think this qualifies as an awkward circus of quagmires. (Gigity).

So we wait. We will wait to find out more information. Despite this set back, we look for the bright spots. Ethan and I did some PT to get him more steady on his feet. He sat in the window and watched the outside for a bit. He also ate like a champ! We can handle this set back. But we are ready to leave.