Thursday, September 17, 2015

A Chloe Update {Post Heart Surgery #2}

Chloe had her heart surgery last Wednesday. It's hard to believe that your prayers coasted us through this first week already. She did amazing with the surgery and even was off of the bypass in amazing time. She's kind of awesome like that, though she doesn't like to brag.

She rocked the first couple of days with only a few slight bumps in her recovery road. Then she started getting some infections...UTI...possible trach infection/bacteria...lung infection now...all things that are treatable, if only we can get the cultures back in time to get on top of which medicine will work best for each different issue.

She was off her ventilator for an entire day, though she's back on it now due to this lung infection/respiratory stuff. But the good news is that she's proven she can do it.

Conversations around Chloe's room:

"In Chloe's time..."
"She's a fighter..."
"She knows what she wants and she tells us!"
"We wait on Chloe."
"Chloe is in charge."
"It's up to Chloe."
"She's a princess and a diva."
"Well we'll just let Chloe lead the charge."

These are words we hear ring through our ears and watch with our eyes. She's doing good, but could be much better. So we are patient. We've walked this path with her long enough to know she doesn't like to be pushed into doing something she doesn't want to do. Not ready to go off the vent? She'll fight us. Not ready to wean off the nitric oxide? She tells us. She's literally the most verbal non-verbal infant/toddler there ever was. It's funny when even her nurses and RT make comments like, "I tried to calm her but she let me know she didn't want any help!" She's fiesty. And for good reason.

So we wait. We be still and patient. She continues to be courageous. We trade off sleeping in her room at night so we can keep an eye on things, but instead we find ourselves still being her nurse and staying up into the late night hours to help comfort her (she knows who her nurses are and who Mommy and Daddy are when it comes to calming her). We suck down some Starbucks and we try for afternoon naps while the kids play in the room. We discuss vent settings with doctors at 3am. We bag suction at 5am. We request another chest xray or trach change at 7am. And we're so, so grateful for the team of PICU doctors who take us seriously, answer our questions knowing we've done our research, and let us be a part of her care. Hats off the the amazing PICU team of nurses and doctors who have come to love on her so much in the days before surgery and now after.

And we pursue living each day of this recovery journey...


Specific Prayer Needs:
-For wisdom to know how to best make her comfortable. She's dealing with withdrawal symptoms from all of the sedation and pain meds. She is fighting us when we try to help calm her. There's a peace disrupted in this mama's heart when I can't comfort my own child as she has slight tremors, a splitting headache but doesn't understand the ice pack concept, and works herself into a fever and mess. 

-For her to rest. Right now sleep is the utmost for healing.

-For patience with each other and our kiddos on these long days. 

-For wisdom to know when to rest ourselves, and when to push ourselves to stay with her and help. Most likely the response to that is "take care of yourselves, get rest, sleep much, take it easy" comments, but with Chloe right now, we push. We must. So we pray for endurance. 

Thank you all for every single prayer said on our behalf.

"...and to know the love of Christ which surpasses knowledge, that you may be filled up to all the fullness of God. 20Now to Him who is able to do far more abundantly beyond all that we ask or think, according to the power that works within us, 21to Him be the glory in the church and in Christ Jesus to all generations forever and ever. Amen." 
Ephesians 3:19-21


Post a Comment