it’s Good Friday and because of that, the city is dead and we love it.

Today has been rather uneventful so far. Mom has not slept since she got out of surgery for more than a few minutes at a time so that is something we are attacking today and there has been a lot more complaints of pain.

I mean rightfully so, folks. Mom is rocking the Mercedes symbol on her abdomen currently, held together by over 50 staples.

You look at that and let me know how you’re feeling after an 11 hour surgery and being buttoned up like Frankenstein. The pain is popping up a lot more frequently and harsher now that she is less sedated and able to move around more.

Today she had PT twice and OT came in for a visit. The best thing for a body in recovery is being on the move. With winces under most movements, she did her laps around the nurses desk and still came back with a smile. Mom has found she likes being in the chair better than the bed and that she is going to try and hang out sitting up more than laying down.

Since the pain has increased she has started a pain pump today, to which has alleviated some pain. Another thing we have had to tackle today is combating her essentially new body learning itself. The anxiety of going through pain, the high dose of steroids, and the pain meds are all shooting Mom’s blood pressure through the roof. After a dose of blood pressure meds, it’s starting to round down a little but this is a path we may have to cross again later in life, all because she has a stranger’s organ inside of her. But wowza, so much better than her shitty dying liver before.

Small things have her and even us questioning our sanity. For example, pre-transplant: pain meds and actually any meds were an absolute no-no unless prescribed or specifically told to be taken. You see, when your liver sucks it can’t filter things, and when it can’t filter things, it sends it straight to you or delays it’s release. On many occasions now there has been a hospital that has given her a small dose of Dilaudid (heavy pain med) when she is in a great deal of pain and for Mom it wouldn’t kick in until almost 8-12 hours later.

This is terrifying, by the way. Watching a nurse push Dilaudid through an IV, it having 0 effect on her, her getting discharged and then hours later, at home, her speaking in a different language, unable to walk, and sick from the pain meds, yeah…. that was like anytime she took them, so we started refusing opioids. This girl couldn’t even take tylenol to give you an idea here on limited medications.

This old liver bit us all in the ass so hard that at a previous hospital stay at Motown, they accidentally overdosed her on Dilaudid, because of how different and delayed her reactions are each time. Watching your mom code and be narcan’d, not fun. Watching the entire staff on the floor run the crash cart to her room and narcan her a second time because she’s unresponsive, also not fun.

So today, when asked, “How much Dilaudid has she received in the past for pain?,” it was the first question we literally have not been able to answer. Physically answer, yes of course we could answer, easy peasy, 2mg was her allowance. Mentally, dude, we have no clue cause her liver never worked.

All I have to say, Thank you jesus christmas for the team here at Sinai. It literally feels like a concierge service. They call you, they fill you in, they see you step in and they come to your room to chat with you. The communication superseeds every expectation I have had so far. It is so hard to be hands off and not do things. On previous stays at other hospitals, I’m changing mom, taking her to the bathroom, helping with basic levels of care to advance levels of care and so on. This unit is run like a well-oiled machine and there is nothing I love more. I don’t feel nervous leaving her here at night or alone because I know that they got this shit on LOCK.

give nurses a raise, they usually do more than doctors anyways.

xoxo

nell nell