Saturday update on Zoe

Saturday update on Zoe

Today is Saturday and it has been nice to be home, all 5 of us together, trying to get back to our normal routine. I wish I could say that coming home is always super easy, but the truth is that there is always an adjustment period for all of us when we get home. Being split apart interrupts the boys’ routines, work schedules, normal routines like grocery shopping , laundry and even seeing the mail! We have had so many offers for help in these areas, and it is all very much appreciated.   I try to keep the boys’ schedules as close to what they are used to as possible, so that it is all semi-predictable for them. This last week or so definitely affected them. We saw strikes, when we are used to seeing singles, doubles or home runs and Keegan suddenly became absolutely terrified of the dark, so we now have a nightlight in their room, the hall and their bathroom (the path to our bedroom). I decided that having a calendar with all of our schedules on it will make it easier if/when we need to be split apart, plus it’s just a good visual thing for them anyway, and will be clear for whoever is here at the house helping out. I did a calendar just for Brody when he was 4 and we used stickers. Each sticker meant something: mommy working, school, basketball…etc. It worked well. I’m going to try to sign them up for swimming lessons this weekend.

We have spent time this weekend playing in the snow, watching (and sleeping through) a movie, reading, and playing! Banning devices was much needed. Something that I hate is that I have resorted to letting them get their devices out during times when I need to administer medicine, talk on the phone to the nurses/doctors/home health, etc.   I am going to work on that, but it has been out of desperation. The time they want my attention the MOST is the time I am NOT available to give it to them!  My patience sometimes wears thin from exhaustion and just being overwhelmed, so I very much want more time with them in 2018, both as a family and one-on-one.

Zoe is Chewbaca while the boys play Starwars, because she chews on it.  

Last Wednesday was the day they said we would be discharged, as she didn’t spike any fevers and seemed to be responding to the second antibiotic. One of the primary GI/Hepatology doctors we see wanted to stop in to see us before we left. Seth was coming in to switch me (I reached my limit the night before) so I stayed so that I could see her. A big blow hit when they came in and told us we would NOT be going home that evening. Apparently the antibiotic she is now on is rarely used, only for emergencies and so it is not readily available.   My heart sank. Seth headed home to get his glasses/contact case and clothes so that he could take over. LUCKILY while he was gone, they pulled some strings and found a way to have the medicine available AND delivered at 11p that night, just in time for her dose! Poor Seth drove ALL the way home and ALL the way back because I still wanted to switch, even though they were discharging us. I’ve learned that it is never fast and I had absolutely reached my limit. Sure enough, he came home hours later.

Free this little Zebra!

I had really good conversations with people on the team that treat Zoe. One such conversation had to do with the ripple effect. I could say SO much about this, but to try to keep it brief, I want to say that in one way or another we are all so connected to each other that you never know when something you go through, or say, or type, or however your express it will touch somebody else’s life. So often I’ll think to myself how lonely this can all feel, especially while trapped in an 10 by 12 foot room with constant interruptions 24/7, machines, being sleep deprived, completely dependent on others to help me navigate this disease, without the comforts of home, picking her up and having to become a pole dancer around her IV pole with wires, lines.., without the company of others, not being able to care for my child in the way that I want to (feeding, meds, where she sits or “plays” sleep schedule….the list goes on and on), separated from my children and husband, and sometimes watching the world through social media (which is not even real life). I can’t even explain it because I don’t have the words on how HARD it all is. Then, as mentioned above, returning home isn’t just a walk in the park.

Seth fixed our hospital bed:

My point to saying that is that every single message to me, whether I can reply or remember to reply or not has meant so very much to me, and I know I speak for Seth as well. The fact that people do care to check in during times when I feel so helpless and out of control means more to me than I can express.  When looking at other people going through something, I think it’s so easy to think “Wow, that’s so hard for them, I can’t even imagine” for whatever the situation may be, and then carry on with life. Now I am more aware of what others might be going through and what could be helpful to that person…whether it’s encouraging words, a hug, listening, NOT talking about what they are going through…and there are many other things, but I think mostly I just mean stopping a minute to realize that we all carry burdens and go through tough stuff.

At first when we found out about Zoe, I was so scared that I physically couldn’t reply to people, let alone seek out anyone else in the same or similar situation. Then, slowly I sought out others, and others contacted me to share their own trying and difficult experiences. I just want to say THAT is the ripple effect. It seems so obvious it could happen, but it happens organically and it means so very much to me. While I have questioned myself on how much to share, how to get through this, how not to let this define Zoe or become our lives…childhood liver disease is definitely still a BIG part of our lives, there is no getting around it. If any of this touches somebody else in a way that allows them to open up to share their story or to connect with somebody else, then I think sharing is well worth it. Having the connections to others and support is what carries me through and helps me be able to handle the heaviness of it all, putting one foot in front of the other, when some days I don’t even want to.   I do still get numb and I knew I would get PTSD just from being in the hospital this much. The ripple effect and connection to others helps me to not retreat into a lonely place too often or for too long.

All of that makes sense in my mind and I hope it makes sense to anyone reading it. It can be messy up there in my mind!  Basically, people need each other.

So…where are we now? Zoe is home. She has two bottom teeth coming in. We have First Steps coming Tuesday to do her evaluation. I had to call the office twice Friday about her color and poop. Zoe is looking VERY yellow and is not her happy self, very fussy even, which makes me very sad. I’ve cried about it today. The hope is that she will start looking LESS yellow as her liver tries to continue functioning, and draining bilirubin. The fact that she did get cholangitis means that there is drainage.   I am taking her color as a sign that she has a failing organ inside of her and it’s making her feel terrible. It’s hard to watch. She also had a very light/abnormal colored poop Friday, and I learned that can happen with cholangitis as well. Based on the conversations with her team last week, the hope is that she will get past this, continue to grow, hopefully at least 5 more pounds before needing her transplant. She has seemed more and more yellow to me each day, but the only way to know what is going on inside is through labs. I told the doctor my fears about all of this being the beginning of the decline. They are hopeful she will push through this, but we are also ready for when she needs to be listed. Her entire evaluation is done, the team will discuss it and either press forward or hold off, but be ready when her liver declares that it’s done. Everything is being sent to Cincinnati and Seth and I are proceeding with our next steps for the living donor screening. Living donor isn’t the preference, they would like to see her with a whole deceased donor liver, but it is certainly an option if we need it. “An ace in our pocket” as one of the doctors said, should it be needed.  I have a maternal tug to be her living donor, but we aren’t jumping to it due to the fact that it is an invasive surgery, not without risk, and it would require us to have to stay even further apart in Cincinnati for it, with even more people needing to step in to support she and I during recovery. They also have to connect the piece of liver differently in the case of living donor, so having the whole organ seems like it should be the first option.

I told the doctor I’m scared of the complications that are happening and don’t want to see her get sicker, the bleeds, big ascites belly, etc. This is the saddest part, she has to get worse before she gets better. Talk about feeling helpless and out of control, I can barely stand it. The good news is that one day we WILL find a new normal in all of this. The liver is a hardy organ and liver transplant patients do well with them. Yes she will be a transplant patient her whole life, but she will have a second (third if you count the Kasai surgery) chance at life.

Truly a miracle.

Nurse mommy. 

For today, she still has her native liver and we will take it as it comes. As much as I’ve tried to prepare myself, or us, there is only so much preparing that can be done.

The last thing I want to say is that prior to Zoe I was one of those people who thought organ donation was scary and didn’t like thinking about it because it made me face my own mortality. Of course now, I have a completely different perspective and am an organ donor. Maybe that is the ripple effect that will touch your life if you are reading this…maybe you will end up being an organ donor and saving somebody, or multiple peoples lives, by giving them the Gift of Life some day. This is hard to say:

Even though it may be a ways off for Zoe, or it could be just around the corner, I’m already eternally grateful to the person who decided to be an organ donor or for the family that will make the most selfless decision with their loved one, that will become our Gift for Zoe, so that we may have the Gift of Zoe.  And isn't it ironic that Zoe's name MEANS life?!  We had no idea when we named her, we simply liked the name. 

That’s all.

Comments

  • Vicki

    Thank you, Carly, for keeping us updated. You are all in my thoughts and prayers daily. Your Momma says it's a roller coaster ride day to day, and in reading your blog, I understand that phrase. You're so strong, amazing, and a great Mother. Zoe is so cute and I pray that everything with the transplant, when it happens, is total success and changes things for her and everyone. And your boys, I just want to hug them! If you ever get in a huge bind, I would be so happy to come hang with them, if needed. Keep that chin up, we are pulling and praying for you all on a daily basis.....and you are loved by so many...stay strong!

  • Ashley

    You’re a rockstar. It is awful watching your kid steadily decline and sharing your story is most certainly encouragement to others. The day I started praying for her donor came long before her transplant, which was terrifying but where your mind has to go to be accepting of the fact that your child needs a new organ. ??

  • Nancy

    Hang in there sweetie. It’s always darkest before the dawn. Lot of prayers are being said by lots of people!

  • Cathie

    Does cota take a percentage of the donation? If so can i donate privately?

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