We may be heading home
Today is Wednesday (I think) and it is looking like we will get out today, pending her labs.
Zoe continued to spike a few fevers and they couldn’t find the source of what was causing them. After multiple tests, panels and scans, they ultimately decided that this was still cholangitis. Apparently she didn’t respond to the first antibiotic-the ONE they use typically for cholangitis-Zosyn. Even though it started off working, it started making her liver act up and her bilirubin climb. As of now she is on two others, but since her cultures never grew anything, she’ll be stopping one before we go home and continuing the other for TWENTY ONE days. So, 84 times we will be administering the med through the PICC. The entire process takes about 40 minutes and at least we can have the syringes ready to go before we have to start.
She finally stopped having fevers, but something new started happening. Her belly. If you have seen it, you already know the size of it, but yesterday it was HUGE. One of the sad, scary and unpleasant things about liver disease is the fact that when your liver doesn’t function right, you can get fluid in the abdomen. That can be dangerous also because of infection. It’s called ascites. Sometimes a diuretic can be used to make them pee it out, but sometimes it also requires the stomach to be tapped. The doctors have felt fluid on her before, but yesterday it was looking like much more. As you can imagine, a stomach that big messes with Zoe’s breathing and appetite. Yesterday she was battling both. After being restricted from eating yesterday ALL day, she finally had her ultrasound. In the end, it ended up being mostly gas for Zoe, and that can be from the antibiotics. I know at some point she could get the ascites belly, but for now we are ok.
The last two days I’ve felt funny. It’s a combination of things. Mostly it’s feeling like I don’t want liver disease to take over our lives and her life and become our identities. I want to talk about Zoe and share her story, especially because of how rare and how research for the disease is underfunded, but I also want to get back to normal life, whatever that looks like. Seth and I talked a lot over the last two days on whether this is the beginning of her liver deteriorating. It could be, and after talking to a doctor for a long time yesterday, it probably is. There is only a handful of people who are in their adulthood with their native livers, my neighbor is one of those people. The fact that she never cleared her bilirubin and her bowel is sewn straight to her liver (causing the cholangitis) are indicators. He said he won’t be surprised if in the next few months we are listed and that the time pre-transplant is just SO hard. She is in the group of babies where the kasai surgery didn’t work optimally and didn’t outright fail yet so that means things are just going to happen. She also could rally, and we'll stay hopeful for that too. The not knowing and the waiting is the hardest. The good news is that she has had her evaluation and next Tuesday her case will be presented to a panel to decide whether or not to list her. We don’t’ think they will quite yet, and are okay with that. It’s a balance of wanting these babies to get as big as possible and not get too sick so they can have good outcomes. The bigger, the better because it’s easier to work with their little vein and artery grafts. All of her results, scans and labs have been sent to Cincy, too. We are expecting more hospitalizations and complications from liver disease before they will want to list.
Through a support group, I found that there is another BA baby who has recently been in and out of the hospital and he’s here now undergoing his evaluation. Guess where he ended up? Right next door! I met his parents and him last night. They have been told he has two months on his liver and so they are working to line up living donor in case a deceased donor doesn’t happen. Because of his size, he may end up being transported to Cincy because they are able to transplant tiny babies. Keep him in your thoughts. He’s really precious. His Kasai failed immediately and so they are moving quickly to get him his gift of life!
So, after talking to several people about how funny it feels to share a lot of our lives, or like I’m exploiting my family by talking about it, I am feeling a little better. I think that after her transplant we will be able to settle down with our new normal. I think part of it is that this all just caught us off guard when we were finally starting to feel normal, even with conversations of stretching out her appointments in 2018! (That isn’t happening) I guess if somebody else sees her story or our story on how we are managing, maybe it will be relatable and could help them make sense of their journey, too. It is my goal, though, to really not let this define Zoe, or the Andersons. I’m hoping eventually things will be uneventful and there won't be much to talk about! Until then, I think it’s okay to share, as long as it doesn’t start affecting the boys or any of us in a negative way.
Last night was a tough one on me. I texted Seth between 10-11 and told him I needed to switch. He was willing of course, but told me to be strong, we would be out today. It was just all of the constant interruptions to her sleep and everything starting to get to me. Today is a new day. She’s happy, nothing grew in her cultures, so I’m sure we’ll be out of here in no time.