The hospital; the memories.

We entered through the emergency room with the transplant coordinator on-call knowing we were on our way. A few hours later we were being escorted up the (not so) secret elevators to the kidney “step down” unit.

We’d traveled those same elevators many times before. We’d used them to go down from the floor to both the kids’ waiting kidneys. We traveled up them many times from the ER to protect the kidneys when the kids were sick, or when they went to and from various procedures over the years. There is new paint down the hall, new walls, fewer offices, new secure doors to different sections serving different diseases and conditions, but you can’t fool us, it feels the same.

Two weeks ago this Sunday, I knew we’d end up at Children’s. I bypassed our regular Kaiser’s ER (our home away from home) called the transplant team to verify what I knew. She’d been on antibiotics the two weeks prior and then five days later another UTI started and then after three days of another round of antibiotics she still wasn’t feeling well and she needed more of something.

It’s a back and forth she’s been used to over the twelve months and one of the things that prompted The Letter.

She was admitted that day and we went home Wednesday. Being admitted was one of the best things that could have happened. Why? Because I didn’t let them discharge us until all of the various issues were addressed in one way or another. Tuesday morning when they talked about us leaving, I said no. At that point, we decided to add other disciplines to do consults.

Luckily, I’d already had a video appointment with the liver doctor that Wednesday morning. She’d gotten The Letter and already had a plan. The inpatient liver team made some tests happen and we were home by Wednesday night.

Wednesday alone we saw 10 doctors, from 4 disciplines, and she had a handful of tests Tuesday and Wednesday to rule in and out some things.

• They reluctantly added an antibiotic to her regimen hopefully to help stop the UTIs and blood infections.
• She is having bladder surgery soon to hopefully help with the UTIs.
• She has high blood pressure that has resulted in an issue that is sending us to an aorta specialist sometime soon.
• She is showing signs of portal hypertension. I guess this will be addressed after the liver itching is addressed.
• They are removing her from a liver med to hopefully help decrease her incessant itching, * especially on her limbs. If that doesn’t work when it’s out of her blood in a couple more weeks, then they will try one more and if that doesn’t work, they will try one more. If that doesn’t work, we will talk seriously about a liver transplant (there, I said it).

By the way, what’s your blood type? (that’s a joke. sort of)

*When I say itching, I don’t mean you feel an itch and scratch it and all is well and you go about your day. I mean itching so bad there is no rest unless you take medication that makes you pass out. The itching rules her life. It’s the kind of itching that takes away your ability to concentrate on anything else, except the itching and scratching and the impact of the itching and scratching. The itching has taken a horrible toll on her skin, on her emotions and her life. It’s kept her away from activities, and out of shorts and swimsuits. It’s one of the reasons why she quit swimming competitively because she couldn’t take the other kids’ scrutiny. She finds little to no comfort from any lotions and potions. So we wait for something – anything – to work. Maybe in a few months, we will have some answers.

We got home on that Wednesday night and after all of that, Thursday she hit the books to study for her first final exam for college and write a paper on one forensics profession (she selected criminalistics). In four days she finished and completed the class with an amazing mid B!

Tomorrow we celebrate her graduation from high school. She gets to walk across a stage, alone, while we sit in a car and others watch it on Facebook live. Even in chaos, there is a lot to celebrate. We get to celebrate she fought back and survived a deep, dark depression and lived. We get to celebrate she lived through kidney failure (thanks Cheryl, your kidney is still kickin’). We get to celebrate that even through sickness, anxiety, and missing over 120 days of just high school, she accomplished so much and graduated on time with her class.

This weekend we will have people over to drive by and stand far apart in our yard and home (come on by) to celebrate her accomplishments and share safely packed food, and safely poured drinks. I usually don’t like to compare other kids to my kids, because I don’t want to make other parents feel bad. But I know the most incredible badassiest young woman around and I have a front-row seat to watch her flourish.

In the face of insurmountable odds, she still flourishes.