Happily Home

It's been some time since we last updated. The most recent blog post is the bleak one where we discussed all of the what ifs that could potentially come considering the condition Chloe was facing with her kidney levels and fluid balance back in February.

But God...

There are moments scattered all throughout the bible where the phrase, "But God," comes in, meaning our circumstances might be X, but God can intervene and change plans.

Chloe took a turn a couple weeks after that last post.

A turn for the better!

We tried a drug called Enalapril to help her kidney. This is a very risky little move because it had potential of not nice side effects, like tanking her blood pressure, which it did. Thankfully they gave Epinephrine to bring her bp back up, and then a few days later we got her port fixed. While we had to give her port access, it ended up quickly in her favor. She had trouble shaking off anesthesia and needed not only Epinephrine again, but also Norepinephrine. The turn for the better is that oddly enough, her kidney loved the norepi and decided to start playing nice again. Fluid starting coming off her better. Kidney numbers started doing better. We did have to put her on a hospital vent with Nitric Oxide to help bring her sats up. Normally she's on a heart med called Sildenafil to help with blood pressure and sats but we couldn't give this med because of the blood pressure issues. When we weaned off the nitric, we all just assumed she'd go back on her Sildenafil that she's been on since last June for her heart to relax its pumping. HOWEVER, Chloe is Chloe. And she kept her sats up and blood pressure good without the meds.

She is currently not on any heart medications. She is on a few types of diuretics for fluid between her heart and kidney, but is no longer needing the most important medicine she used to receive.

Praise the Lord!

And all the doctors shake their heads!

So she kept doing better. She kept improving. She weaned back off the nitric and onto her home vent. Her sats stayed up. She got to her baseline weight. She met and exceeded all of the "goals" we set for her in that care conference.

There was a scary hiccup in there to be praying about. We requested a bedside eye exam to check that off our list instead of needing a yearly eye appointment and exposing her to yet more germs at another clinic. The eye docs requested a head ultrasound. They found what appeared to be swollen ventricles. A) Damage to brain over time due to prolonged hospital stays, surgeries, low sats, codes, etc. B) Blockage somewhere, most likely needing a shunt which we weren't sure is a possibility for her. We tentatively scheduled a CT. But God had this. He was already ahead of us. The next PICU doc remembered she's a Glenn baby, and that heart surgery makes pressures change throughout the body, especially in the head. Her fontanel is always swollen, but it is not firm/hard, so he did not suspect a blockage. And she was acting like herself-not in pain or out of sorts. She's still gaining new strength in skills and development that she'd lost over time, and is starting to learn new skills, like reaching for things or grabbing things with both hands at same time. The PICU doctor suggested that while most Glenn patients have the horrible pressure changes and headaches from it, that it usually resolves within a few weeks. In Chloe's case, #becauseitschloe, we all know she takes much longer to adjust to changes and because she's on the vent, the doctor believes since her fontanel is still soft that it's still just pressures changing and something we can monitor at home and follow up later if needed. Something that became a scary, possibly end-all/stop point if a shunt wouldn't work suddenly became such a relief. So we watch and monitor.

And we brought her home last Tuesday. And she's been a happy baby ever since. 

We'll still be having a bunch of upcoming appointments, but for the most part, we're home, she's growing, she's thriving, she's cute. And we're adjusting back into our normal routines, school, nursing help, work, and all that goes with this. She gets her first physical/occupational therapy at-home session this week for the first time since after Christmas!! For now we're focusing on watching her weight/fluid balance, letting her grow and thrive, and just soak in each new day.

And a HUGE shout-out to Nurse C. and Nurse B. who primaried her for days and nights and made her a happy little creature in so, so many ways. We're so thankful for your hearts for our girl, for your prayers, and for the many ways you guys went above and beyond to love on our family while giving Chloe excellent care.

**Praise: For our new home health nurse who has been a Godsend!!
**Praise: For the fact that for 4 of the 5 nights we've been home, Chloe has been sleeping ALL night!! She's only needing suctioned a few times throughout the night or diapers, but is actually sleeping all through the night again and allowing us sleep as well. 

 

Bonus: Head over to Our Chloe Elizabeth on FB or to jodie_and_alan on Instagram to see video of her rocking it out to some music and her coming home video of smiles in the car!

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Tomorrow, March 22, is 3/22 (3 of chromosome 22) and we celebrate Mosaic Trisomy 22 peeps around the world. 

Show your love and support by wearing 

GREY AND TEAL, Chloe's trisomy colors.