Officially listed with a PELD of 19/40 and other stuff.

This is a few days worth of info so it’s long.

Transplant. Zoe is officially listed for transplant. I took her to Riley Friday for the labs and weight and height check they needed to list her. Her PELD (Pediatric End-stage Liver Disease) score is 19/40. Of course I don’t like seeing or hearing the words “end-stage” or “liver failure” when it comes to one of my children, but I know that we are headed towards receiving the ultimate gift that somebody can give and that helps me.

Early on, I knew that I needed to understand the entire picture of this disease, as best as I could so that I could mentally prepare myself for what was to come (if that is even possible). Even though there weren’t talks of transplant yet here, I wanted to know what it would look like if/when the time came.   Because Zoe fell into this grey area of the Kasai “kind of working but not great” I decided to get a second opinion in Cincinnati. It wasn’t because I didn’t trust the team we see here, it was more that I wanted to see if there was more info/stories on babies like Zoe. Even though the disease is a bit different in each person as to WHAT happens, I’m still happy that I did all of that back in the fall. I think it has softened all of this a bit for me. I just couldn’t imagine being in crisis mode, split apart, and ALSO the transplant talks/eval JUST starting. I am sure that it is a delicate balance of not wanting to overwhelm families with too much info, and not wanting to jump ahead, not knowing what she and her liver will do.   Even so, I need all of the info.   I wonder if the people we see are like, “Oh boy, not her again!” Hopefully not. I think I have done better with the unpredictability of the disease, (begrudgingly).

In the fall we met with the transplant surgeon as part of the evaluation process. He looked at her labs and was kind of like, “So why are you here?” At that point she was so stable and I am sure that it seemed like we were jumping ahead and maybe they weren’t used to a family wanting to have it all done, just in case? I don’t know. I did cry that entire day though. We had to drop the entire 2-day eval in Cincy because she got sick, and in Cincy they seemed so certain that we SHOULD go ahead and evaluate. It put us in a weird situation because we just hadn’t had that talk yet here in Indy. Ultimately the team here agreed she needed to be evaluated here too, so everyone ended up on the same page, but I did feel almost guilty that I sought a second opinion for Zoe because it caused us to get different info that maybe the team here just didn’t discuss with us yet.

Now, looking back, I’m happy we did go to Cincy and feel good about the plan that she is listed here and Cincy can be the backup if we decide to go with living donor. That day we met with the transplant surgeon, we learned what the whole process will be, and what to expect as far as labs/appointments in the weeks/months afterwards. It was a big piece of the picture that I wanted to know so that I could anticipate how much help I would need with the boys. It was worth it.

One thing that happened that day that was awful was that a 100-dollar cash donation for Zoe’s COTA fund was stolen out of my purse. Seth and I were both frazzled that morning and ended up driving separately. I was just anxious and spacey that morning and left my purse in the waiting area when we were called back, Seth wasn’t there yet. By the time I realized I lost it, we were already in the room and I thought maybe I didn’t even bring it inside in the first place, maybe I left it in the car. I went ahead and told the staff. Soon after, a staff person brought it in and I was like, “WOW!! How lucky that somebody found it AND turned it in.” Well, later, when I went to get the cash donation to put it in the bank, guess what WASN’T there? Fortunately all of my credit cards and everything ELSE was still there, somebody just quickly grabbed the cash. It devastated me. I just was so angry because she didn’t deserve that and she doesn’t deserve liver disease. I felt sick over the fact that somebody gave us that money for Zoe and in my frazzled spacey state I LOST it. In the end, I had to tell myself that the person who took it needed it. We replaced the donation and I let it go. But it made me DREAD going back to that liver clinic in the future wondering if they would see me and recognize me as the person they took money from. Lesson learned. Seeing people share Zoe’s story has restored my faith in humanity.

One good thing is that one of our doctors told me the transplant surgeon is a PERFECTIONIST, and THAT is the person you want to give your daughter a new liver.   Yea, I do.  I can't imagine being in the position of deciding that an organ is the ONE that will save a person's life.  When we get the phone call that there is an offer for a liver, the doctors will have already discussed it and decided that it is potentially the ONE (there is always the chance something could happen even after it seems to be the ONE that would make it not viable for Zoe).  I asked if we would ever be in the position where WE have to decide.  I was nervous that they would be like "Well, we have this offer, but it's up to you whether or not we proceed..."  They said that we won't be in that situation.  It will be certain.  Even though I see the frightening and sad stories around BA complications or transplant, I still hold onto something one doctor said to me: "liver transplant patients do well and if you bumped into somebody on the street with one, you wouldn't even know it!" And to be honest, I have experienced this mental shift in that I am ready to be on the other side of it all. And that means starting to pray for the perfect liver for Zoe and for the donor/donor family, instead of praying that this one will last. It’s a big mental shift. It’s a lot.

My biggest concerns at this point are about her growth and blood in her poop. I don’t think she is growing and I’m going to bring it up to the team Monday. Her weight Friday was less than her last recorded weight on Jan. 7th.  She is eating ALL OF THE TIME, which is actually opposite of what happens with progressing liver disease, usually they don’t want to eat. It sort of seems like it was when she was a newborn, eating tons and not gaining. Malabsorption? Maybe just growing in height right now and not weight?

 

Yesterday Zoe had to go to the ER because there was blood in her poop. It wasn’t a lot, but it was something new, so of course I had to call. It actually happened once, and I told myself it it happened again, I’d call. It did. I pushed back asking if they could just look at Friday’s labs or send a home health nurse to draw labs if that was all they were going to do in the ER. They didn’t agree to it. So, my mom and I spent 5 hours in the ER. Now that she is older and busier, she’s harder to wrangle. So thankfully, my mom came to help me and also let me be angry, sad, emotional, cry….I was a big big mess, not feeling well myself. In the end, her labs were ok, other than her clotting numbers worse, so they did an infusion of Vitamin K and we went home.   It’s bright red, so I think that means it is in her lower GI tract. Who knows what it’s from. I mean, we KNOW it’s from liver disease, but is it a varices, or is it a little tear somewhere? Irritiation from the tons of meds she’s on? We just have to keep an eye on it and if it’s more/worse or if she vomits blood we go back. I find myself again and again with this maternal tug to jump to living donor so we don’t have to watch her get worse, but I am really working on trusting the process. Two other BA babies died recently from bleeds, so I know this isn’t something to mess around with.

She's like, "seriously mommy, are these things on my arms really necessary?!"  (yes)

And now for a selfie I never thought I would post...big mess.  

Something kind of good and sad…Seth is out of town right now. He takes a yearly trip to Colorado to snowboard. He hesitated on going this year but I encouraged him to go, even knowing it would be hard for me. I know he feels bad being there while I am here, but I just want him to have fun and burn off some stress on the mountain. My mother-in-law took the boys for the night, so it was supposed to be a mommy/Zoe night, but things just took an ugly turn with the ER visit. That was part of my meltdown. When Seth gets back, at some point I will go somewhere for a break for a day or two. Maybe even just a hotel locally. We have been so tethered to this situation that we both really NEED a break. Yes, ideally it should be together, but it is what it is for now.

I told him to wear a mask on the plane because of the flu.  So here he is with his brother appeasing me.  (pretty sure it came off right after this pic)

Brody celebrated 100 days of school!

And our project is now a puppet theatre

Captive audience

And that's about it.  

Comments

  • Teresa

    You are amazing.

  • Casey Galloy

    Hi. I'm friends with Sara, next door to you. I just wanted to post and say hang in there! You are one strong lady, for sure! We are all with you and thinking of you and your family!

  • Ali Camp

    I just wanted to extend my name and number/email again in. Case you just need to or want to talk. My daughter Grace has biliary atresia and is now 14. We have been following your blog and she/we are interested in helping in any way possible. We pray for Zoe all the time that she will be blessed with a donor match. Ali & Grace Camp 317-698-8583 Acamp@msdwt.k12.in.us

  • Grandma ChaCha

    You are an amazing mom!

  • Jennifer F

    You deserve a night away. It's ok for some me time to refresh your mind and body. Hang in there. We love all of you!

  • Ashley Brown

    You're seriously killing it and the fact that you're being real about your emotions... how absolutely AWFUL this is... is fantastic. It will save you a couple hundred bucks in therapy down the line. :) Always thinking of you and praying for you and the fam.

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