We are home.  I get extremely homesick.  

It was a long day.  The plan was that we would be discharged "first thing" if Zoe's numbers were trending down.  Of course hospital time "first thing" is different than my definition of "first thing".   I had to politely nudge/remind them today of the plan so that I would make it home for the IV medicines and home health nurse that they arranged yesterday.  I raced home and made it.  The nurse spent two hours with us and then came back at 6p for me to make sure I was comfy with our new routine. Zoe was getting back to her happy self, but was also exhausted today. Her tummy is extra big.  

I think the nurse read my face totally wrong, because I definitely was following along, but the only thing I could think about was wanting to sign the boys up for swimming lessons.  I know that seems random, but let me explain... She kept going over it, which was also appreciated, but in the back of my mind I just kept wondering how this new routine would fit in with the rest of our lives. I really really want to get the boys in swimming lessons but all I could think about was the ten medicines she's on, her appointments, her labs, her nutrition and if we would need the nose noodle again soon, and now giving her this antibiotic and following this routine every 6 hours, and also feeding her in the middle of the night if it doesn't coordinate with the antibiotic.  And her poop, and the fear that she is immunocompromised and Keegan is sick.  And the physical therapy starting through first steps.  And all of the boys' daily grinds.   But at least our heat is fixed. Yea... as it turns out 3/4 fuses were blown so it's actually not 55 degrees in every house in Fishers because the heat can't keep up, it just wasn't working.  

So, I think the tears she saw in my eyes were just from me being exhausted, overwhelmed, having flashbacks to a place of anxiety and worry about how the heck we can manage all of this.  And how my heart is ripping into pieces because of how this affects the boys, especially Keegan (who is sick as of this evening).  I am hoping in 2018 to try to spend time one-on-one with the boys somehow.  

 Ten more days and 38 IV administrations (but who's counting?!) until we see the liver doctor and that will determine whether or not we can at least get rid of the PICC. Yea, that's a tear on her shoulder during the dressing change.  Sigh. 

About that hole in her heart...it's called an ASD and it is small and in between her atria.  They will make sure cardiology sees it and talks with the transplant team and go over that, plus all of the transplant evaluation stuff with us in February.  It would be worse if it was in the ventricles.  It's small.  I'm not worried at this point.  

Zoe is a lot more active and aware so keeping her PICC protected will be really important, as well as following the steps to administer the meds.  It's a lot.  The scariest for me is getting the air bubbles out of the saline and heparin syringes.

My sister came to learn how to do the PICC antibiotics, so Zoe and cousin Zac had a reunion. 

I excused myself from the home nurse and went upstairs.  I cried a lot today.  It's a combo of what I have already mentioned and also not wanting to deal with any of it, to be honest.  I am trying to remember to take care of myself (but when? how?).  I think it looks easier in pictures than what the reality shows.  I took a nap, then a shower and then felt like I could put one foot in front of the other again.  

Please pray Zoe doesn't get cholangitis ever again.  If it starts happening frequently, that will push her towards transplant.  It could be frequent or rarely.  Now I know why they stressed we always need to know where the nearest children's hospital is if we travel, this isn't something to mess with. 

I'm happy her transplant evaluation is done.  It will be good for 1 year, so if 2018 is the year she gets her gift of life, that will be one a few less stressors to think about.  

As always, thank you to anyone who reads this for thinking of us.  


  • Kristina

    Let's hope that 2018 is her year so that she can feel well and shine brighter than she already does. You're all amazing

  • Denise

    Hang in there! If we can help in any way, just let us know. We are praying for all of you!

  • Whitney & Jackson

    You're doing a great job. Prayers being sent from us.

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