Wednesday, July 27, 2011

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!

7 comments:

Anonymous said...

Hey Krista. I don't know you personally, but I have been praying for your daughter and the rest of your family. I am 16 years old and was diagnosed with heart problems in September when I was 15. I found this music video and thought it might help you like it has helped me in the past year. http://www.youtube.com/watch?v=1CSVqHcdhXQ
I hope you enjoy it.
~Amy

BlessedMommy said...

Continuing to pray!!!

Neysa

Riete said...

Krista, you can ramble like this for ages, as far as I'm concerned. What a great and clear way to explain God's "in control".

I'm glad to hear the doctors are looking beyond the virus now. You said it all along and Mommy instinct is often on the right track.

I'm praying for you all!

jean Fischer said...

Krista, Although we don't know one another, I've been following your story on Facebook. I love your insight about God being in control. I'm much older than you are, but like you, I've learned through my life experiences that, indeed, God IS in control, and if we quiet our minds and look to Him, He will teach us what that really means.

God bless your little Annabelle, you and your family. I'm continuing to pray for you. I wonder if you realize just how many lives Annabelle has touched.

Keli Gwyn said...

Continued prayers in California. My husband even included Annabelle in his prayer before our meal last night.

Unknown said...

Amy, thanks for the link to that beautiful video. So true. I know God sometimes has to use drastic measures to get my attention. =( Wish I listened better --- I'm trying to work on that. =)

Krista, I don't think I've ever posted before, but I've had my church praying for Annabelle for months now. Your babe is loved the world over!

~Frances

Thomas Jamison said...

Iam still following your blog since June 12th,2011. I miss some days becuase I don't always get to the blog. I limit my computer time
to everyother day for two hours or maybe a little more because I do facebook and e-mail. Do you have an e-mail that i could use. I know that God is in control. I was in depression for seven years. I have
had man hy sad thngs happen in my life.Yet,God has always been there in the person of Jesus Christ. I also believe in the Holy Spirit. They have all been in my life. I have seen God work many miracles in my life and other people's lives. He has a plan for all of us but sometimes it takes tragedy before we recongnize it. Yet,many still don't care about God in their lives. Faith is a gift that needs to be appreciated. Iam glad to say that God has my whole life from here to eternity. God bless..