Today’s Plan

“Official” read on her echo yesterday was actually that the function of her heart was good. However, the pressures in the right side of her heart were higher, which points to either:

Mild Rejection (mild because the squeeze is good)

or

Lung issues (chronic lung disease, infection, fluid)

Regardless, we are staying on the 3 day steroid course because even if it isn’t rejection, steroids could help her lungs too.

Still no “cause” for our issue on Saturday. I’ve finally reconciled myself to the fact that we probably won’t ever know for sure. But I’m feeling better that the actual squeeze of her heart is good, and the transplant cardiologist is pretty confident that everything is fine with her coronaries.

Right now, we have no plan to do a heart cath/biopsy which would confirm rejection. If there are further changes (to the bad) in her echo, we’ll relook at this option.

So, TODAY we plan to:


EXTUBATE!!!!!!!! She rocked her CPAP trials overnight, and is SO ready to have that tube out!

However, we want to have pulmonology evaluate her this morning if we can, just in case they want to do a bronchioscopy on her while she’s still intubated. If they do that, I’m unsure if we’d extubate today, but still hopefully this afternoon! Mommy wouldn’t actually mind one of those. It would give us a good idea of just what is going on with her lungs, so when we just assume things are from lung disease, we have recent data to back it up (vs. from November when she was diagnosed with mild, left-sided bronchomalacia.) But, if they decide not to, I’m okay with that too.

AND, once we extubate and are stable, we can start back, slowly her feeds! WOOHOO for that!

They also talked about at some point doing a repeat reflux study on her to make sure her nissen is still working fine,a s there is a possibility if she aspirated during the night (meaning spit or stomach contents got in her lungs) this could have caused her issue Saturday morning too.

So, those are the things we are working on.

Mommy is feeling better about it this morning. I feel like we are finally looking at a multitude of things vs assuming it was a virus, and I have a better comfort level about it all.

As far as the “HOME” question… that is outside of my 24 hour window, so neither myself or the doctors are making any guesses at this point. Hopefully by end of the week we’ll have a better idea and be able to start looking toward that.

*****

A very well-meaning momma posted on my Facebook the other day, “God’s in control, even though it doesn’t seem like it at times.”

 I totally get and appreciate this comment. But as I read it, I realized something.

Somewhere in the past year, I’ve become increasingly aware of what it means for God to be in control. And now, as we sit here, it isn’t something I even contemplate. I just “know” it. 

I think when life gets “out of control” it is easy to then point to God and wonder, aren’t you in control? Why did you let things get so out of whack?

Funny though… when things are really good, how easy is it to pat ourselves on the back and give ourselves all the credit? Promotion at work? Yeah me, I worked hard for that! Good report at the doctor? Yep, been eating all the right things, GO ME!

My rambling point is this: God IS in control. But he also gives us free will to make choices. We aren’t robots with him at this master control panel dictating our every move. 

God being “in control” is a much different concept. I see it when everything is going crazy and I look to Him and feel calm. I see it when the doctors are all saying different things and I’m so frustrated and God wraps his loving arms around me and says, “I know it’s confusing, Krista. But you’ll get through this.” 

God never promises roses and sunshine for the rest of our lives. In fact in his control, sometimes he allows things to happen to grow us. We don’t understand them, and never will many times. But I have faith that my Daddy God knows all and loves me and is in control of my life, and when I rest in that, I feel SO SO SO much better.

That doesn’t mean he doesn’t give me responsibilities. I have this drive to fight for my daughter, and I believe it is a drive he has given me as her Momma. Yet, I can’t let that overtake me and let sight of the fact that I need to let God control that drive.

It’s like… It’s like working. God promises to supply our needs, but He also gives us the responsibility to work hard and follow his direction and be obedient. 

Anyway, sorry for rambling, but it’s just something I’ve been thinking about lately, so thought I’d share!

THANK YOU all for your prayers and thoughts and well-wishes. We appreciate them SO SO SO very much!!!! You are SUCH an encouragement to me, thank you!