Remember that time I said we were ready for 2018? Well...

And here we are again.  Yesterday we were teetering on a return visit to Riley and Zoe and I are here now and have been since yesterday. 

 

I just want to start out by saying that the level of concern of the doctor we saw today went from a 8/10 to 5/10 after seeing her imaging and labs this morning.  So my level of concern went to a 7/10. I told the doctors this morning that my biggest fear was that this is the beginning of the worsening, but after several reassuring talks with the doctors, I feel better now. This could all very well just be something she picked up here the first time...a virus or something.  She's just immunocompromised with having an underlying medical condition. 

 

As usual, I feel like I need to back up a bit before I can talk about our current situation. 

 

The end of 2017 was going so well that I told myself that we would be ready for anything 2018 brings.  I just wasn't expecting it to bring anything so soon!  I am very thankful that Zoe made it through Thanksgiving with all of us having the cold/cough/congestion and some of us even getting slammed with it twice.  She made it through all that and through her first Christmas, which was very special.  

 

Saturday evening, the home health nurse returned at 6pm to make sure I felt comfy with administering the antibiotic through Zoe's PICC.  I felt good about the process.  I felt much better after that nap and shower so I hope she could sense that I followed along with her easily, too.  I was able to give her my undivided attention without my mind wandering to swimming lessons and balancing life and children and liver disease.  

 

She went ahead and changed Zoe's dressing while there.  That wasn't fun. 

Really the night was uneventful.  Seth and I tag-teamed doing the medicine through the PICC together and luckily her two overnight feeds corresponded exactly with when she needed the meds.  

 

She seemed like her normal self, just as she did as we left Riley.  By 11am I thought she felt warm.  The magic number to call the on-call doctor for is 100.4 and the (new) thermometer read 100.  I decided to call.  The resident doctor told me to watch her closely.  

 

So we did.  Didn't take our eyes off of her, in fact.  

 

Going back home after being here is always bumpy.  It takes all of us time to adjust, especially when there is something new added to the routine.  This homecoming was especially hard for the boys...mostly Keegan, who didn't feel good.  I don't know what is going on in his little three-year-old mind, but I know it's so hard to be a middle child, because I am.  ha.  (Just kidding, family)  At bedtime, I asked the boys if we could say a little prayer for Zoe as she and I were heading out the door back to the hospital.  Keegan's went something like this "I love Mommy and Daddy and Brody and NOT Leni (our border collie, who is also having a hard time.) and NOT Zoe until she gets a new liver."  So there you have it, he doesn't know what to think. 

 

When I told them what "resolutions" are for new years, we decided to set a few goals.  Brody's was to learn how to make  PBJ himself, so of course Keegan's was too.  So here we are trying to be normal amongst all the craziness:

 

We could see that Zoe was becoming more yellow in both her eyes and skin, and sure enough her temperature climbed.  When I called again it read 100.8.  After some conversation about what they would do if we brought her to the ER, it was decided that we could have it all done at home by the home health nurse.  The same nurse that we had Saturday came and did labs and cultures and sent them right away.  I was super relieved to have the same nurse because she saw her just the day before and so she could look her over to give me her opinion.  She agreed with what we were seeing.  

 

We waited.  While waiting, I started panicking and wondering if this was going to be the start of a lot of time apart. My house was a wreck, laundry wasn't done, dinner wasn't made, my kids were all starved for attention and not feeling good, crying, fighting.  Just the normal stuff of everyday life but X 10 because of exhaustion, worry, fear, and limited patience.  I hadn't even unpacked our bags from Saturday yet and I had a feeling we would be heading right back.  Luckily my parents were able to come by so that they could hold Zoe while I cleaned the bathrooms, Seth made dinner and I could feel good enough about leaving the house once again. I keep waivering between feeling like she will be ok, and OMG this is the beginning of the worsening.  I have ultimately decided that I just want to be as organized as possible so that when Seth and I switch off or if people are at the house helping, it's as easy as possible on everyone.  For example, I want to make sure whoever is there with the kids knows when it's PJ day, or library day, or that I give the boys probiotics in the morning, what time the bus comes, etc.  The problem is that I am not a very organized person.  Seth is better about all of that kind of stuff.  I have said it so many times, but the hard part is not knowing.  Is this liver? Is this something else?  Is it both?  Will it go away and never return?  Will it start happening more frequently.  It's hard not to try to anticipate, but I'm reminded a lot that this disease manifests itself differently in each person who has it.  

 

When I see and talk with my neighbor, Sara...I feel less scared about Zoe.  Sara is in the 5 percent of people her age who have not been transplanted.  (More on that another time)  One time our main liver doctor said she was a miracle.   And if you meet her, miracle is only one of the words that can be used to describe her.  She's funny, supportive, organized, thoughtful, selfless...If she's reading this, she'll probably be embarassed but it's all true.  How did we get so lucky to move right next door and meet little Zoe's soul sister?

 

 

Ok, see how unorganized I am in both life and thoughts? I haven't even finished typing the update about Zoe.

 

So, the doctor did call us back and said we needed to bring her back.  Her bilirubin doubled just in the time we had been home, when it was coming down when we were discharged.  I knew that at least this time, if her PICC was still good, Zoe wouldn't have to be stuck like a pin cushion and so that made it all bearable. Being here now, I still am homesick and miss the boys and all the comforts of home.  The cot bed is slanted, so I joked I would wake up on the floor.  The toilet in the room wasn't working...(It has since, been fixed)

 

They decided to go ahead and put her on a different antibiotic, event though the Zosyn is usually the ONE for cholangitis and it would also cover many other things she could have.  They put her on another broad spectrum antibiotic to cover even more.  They also swabbed again for flu/viruses. 

 

Now, back to the beginning of the post, they felt good about her numbers being slightly better and her X-RAY looked good as well.  So...the plan is to watch to see if she spikes more fevers, wait for the cultures to see if she has something that they can target specifically and take it a day at a time to see what her labs do.  (There's those words again...day at a time) There are other tests they can do if things continue to happen in this pattern, so that's reassuring.  I'm feeling ok about everything for now.  

 

She perked up on Tylenol. 

 

We have a semi-plan for us to switch back and forth and for the boys while waiting to see what is going on. 

 

I've said before that April felt like a roller coaster, so this feels like one too but with smaller hills. When I said we were ready for 2018 and whatever it brings, I think I actually wasn't quite ready.

 

It is now 3:30p and she's starting to get a fever again...so here we go up the next rollercoaster hill.  We'll see what the afternoon brings.  

 

 

Comments

  • Holly

    Thank you for these updates. I appreciate following the events and knowing how you are doing. Sending love and strength??

  • Holly

    (That was a red heart. But it came through as two questions marks)

  • Sara

    Love you all. ??????

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