Happy Easter, Jesus has risen… we have not. We are still on the 6th floor TICU and need to get to the 9th. 9th floor means step down unit and the regular transplant floor. Our goal today is to get a few things regulated before moving onto a floor with less staff and supervision.

She’s still trying to run laps and definitely giving her nurse for the past few days (Vic) a run for his money. I need to once again touch on how excellent the staff is here. Vic has come in countless times to reiterate information to Mom and explain things she doesn’t understand or just generally comfort her. The nurse to patient ratio of a 1:1 or 1:2 has shown us just how dedicated they are to giving their patients top level of care. We brought in a million pounds of Easter candy today to try and help sweeten the floor up since they’re here today working so hard.

We have been flooded with calls and texts and have seen and read every single one. If it has gone unanswered, we are so sorry, we saw it and meant to but it has been crazy.

Another note, Mom does not have her phone. She is on a plethora of meds and some are the really fun kind that makes you unaware of time and has you call people at 3am, so until we have a more familiar baseline, she will remain phoneless. During the day today we let her see it for a little bit so if you heard from her today, Happy Easter!

We’re still struggling a lot today with emotions but that’s all to come and is totally normal. Overnight she had told us she called for help a bunch of times and no one came, but me, *the MYCHART stalker* noticed she called, they answered, they did a full ekg workup, bloodwork, and was checked on when she complained of chest pains.

This morning I was also told the same thing as soon as I came in from this nurses. The meds get us a little confused at night but nothing that a little reading and talking can’t clarify.

Currently Mom hates me more than the towns folk hated Pontius Pilate. I continue to uphold my “mean daughter” persona and continue to be her number one pain in the ass… exactly what I was born to be, fulfilling my one true life’s goal, especially when I ask the doctors or nurses any questions clarifying a story that seems a little ~odd~.

While on leave from work since January, Mom and I have spent a lot of time together. We have gone to a lot of appointments and have gone through a plethora of ups and downs. She is sick of me, rightfully so. Having a disease that’s clouding up your head with ammonia that you can’t remember daily things then you thinking that your 32 year old daughter is treating you like a child because you can’t remember what you are told is just a huge double whammy.

Everyday leading to this road has been a battle. A real battle, like actually fighting. There are more times my mom and I argued than got along these past couple months while trying to keep her healthy waiting for this call. Just to give you some insight here, someone that suffers from hepatic encephalopathy handles the same way as a patient with Alzheimer’s or dementia. The liver is a direct line to the brain. I remember a few years ago watching a show where a woman with cirrhosis couldn’t remember her children, then a few short months later mom was diagnosed and while she was not healthy there were no issues with her memory, yet.

Early December Mom had her first head to head with a wild round of encephalopathy. Everyone is sitting here like, what is that? Remember the direct line to your brain part? Well that’s where this bad boy comes in. Your liver stops working –> your liver can’t process the shit you put in your body –> your liver can’t metabolize the ammonia in those things –> brain glitches.

Now I mean, a real brain glitch. I’m talking, washing a pan of fully cooked brownies in our sink at 8am, Boonton PD came, we had to reintroduce her to people she already knew and she wasn’t even sure where she was. Ryan handled that like a pro because I was boarding a plane and absolutely terrified thinking about Babci and her dementia days. I wasn’t afraid for what was to come, I was afraid because I knew Mom was afraid. There is no worse feeling on earth than not being able to help someone you love because there is literally nothing you can do.

I try to do everything in my power to give her the fastest, easiest, least painful, and best way to move forward and sometimes, from the outside it does not look like that. I’ve learned over these past few years that it’s ok because it doesn’t have to look ok to everyone, it’s what works for us.

I have to give a huge kudos to Mom’s friends that have backed us and gotten behind the plans we have in place for her in order to continue her healthy journey. Sometimes being on house arrest for a week is better than letting Flu A kill you because you wanted to go somewhere stupid.

She may totally hate me now because I’m the ENFORCER, but she’s definitely going to hate me even more over the next year because of all the new things coming. We all have to continue to remind her that this is a new lease on life and that these rules and me being a bully are only temporary. Her mind will be back, she won’t have these memory bouts, and soon enough maybe she will be back on the road again.

Jesus take the wheel, literally.

xoxo

nell