Well, apparently, it’s July. This has been simultaneously the slowest and fastest summer we have been experiencing thus far. I wish we had more of an update. I really do.

After Mom’s procedure her numbers started trending better. Betterrrrrrr, not good, but better. Since her transplant she has had amazing bilirubin levels. Example patient bilirubin levels, even when given the rejection notice, her level remained normal.

This past week, her bilirubin numbers have started to raise. This means her liver is starting to not work correctly and unable to filter her bile correctly. So on Tuesday they told us they would schedule her for another ERCP asap. The minute I pulled in the driveway from the city on Tuesday, my phone rang and it was a coordinator for the procedure to happen the following day. Last time, it was weeks before we were able to get this done. Now you have me thinking, “Today, we go? and now we have to come in tomorrow? That can’t be good.”

So needless to say, we spent many hours in the city Wednesday and returned back to Jersey around 9pm. The small 20 minute procedure that happened last time ended up being a 3 hour procedure this time. After meeting mom in the recovery room, her doctor came in to let us know that it was “quite messy” in her ducts so he “Roto-rootered” them. 🙂 Ok now say that in a thick cockney english accent. Her doctor is great and also wonderful at explaining things in layman’s terms.

Essentially they told us that they cleaned out her three little trees of ducts that come off the main artery/duct flowing from her intestine to the liver. Something very interesting is that, that is where donor meets receiver. The bile ducts are from her deceased donor and are flowing to the liver and the trunk of the tree in which the flow down through into mom’s roots, rooted in her intestine. INSANE, science is so cool! So after he cleaned all those and was able to widen two of them, he placed two additional stents in there to see how the next couple of weeks go to see if we can lower that bilirubin level and help her out of this small situation she is currently in.

So far it has just been rinse and repeat each day. Essentially just waiting for answers, waiting for lab results, waiting for meds to work… a whole lot of fucking waiting. I’ll tell you that. Mom is handling all the pokes and prods totally fine, like always. She is pretty used to it by now but something she can not deal with (which is another huge side effect back in FULL force) is the itching.

I understand how much it sucks to have an itch and not being able to fully scratch it but I swear, this woman is trying to scratch all the skin off her entire body and has no interest in growing new skin if that means that it will grow back and itch again. Constant itching and burning coming from the inside out. Hands, feet, chest, and ears are the most effected and ice packs directly on her skin seem to be the only way she feels ~ok~ for 30 seconds. (I am not condoning this ice pack behavior!!!!!) This crazy lady leaves the house earlier with Aunt Michele, is gone for less than 10 minutes and immediately calls me:

“Hi, so uh, can you uhhhh, put a bottleofwaterinthefreezersowhenigethome……………………………………………………………………..you know”

I immediately burst out laughing and I said, “You sound like a crackhead calling their drugdealer concerned about their next score even though you picked up 10 minutes ago.”

“YOU DON’T UNDERSTAND THIS IS ALL I CAN THINK ABOUT”

“You’re only making your case worse/proving my point further!!! Yes I’ll put a waterbottle in the freezer, love you, bye”

“Love you, thank you, Bye!!!!!”

I laughed through the entire thing. She came home and I had her talking to herself out loud speaking affirmation type things, “I will NOT scratch myself.” “I am NOT itchy.” and if you know mom, everytime she said one of these things it was followed up with a smartass comment under her breath like “yet” or “right this second.”

After she finally had 5/9ths of an eggo waffle.. she asked me to cut it like that, very serial killer-y, anyways, she finally got her pinkish color back in her face. She was looking incredibly terrible earlier in the day. (Mom if you’re reading this-no offense or anthing) So that little bit of eggo waffle, a boost, and a piece of bread. That’s what food looked like today. We’re barely managing getting through some days nutritionally. Constant nausea that 8mg of zofran isn’t touching. Other days, we can get one solid meal down in a toddler size portion and a small ice cream but I will take it over anything. Ice cream is her weakness so I know she’s down for the count when it doesn’t appeal to her even in the slightest.

Small hurdles. We overcame our largest one yet. These are just bumps in the road and the construction crew is out and working.

Hope no one took their fingers off this 4th. If you did, make sure you have organ donor checked on your license for your next stupid idea.

xoxo

nell