Tuesday, April 14, 2015

Weak Heart....Strong Spirit

Sorry for the delay.  It's been a busy past couple of days.  We have run many tests as we work up her heart and fluid status.  Emma is doing ok.  She has a lot of things, though, that we need to work out.  Her fluid status is one, how her heart will recover from surgery is another, nutrition, so on and so on.   Really, a lot of this will take time to figure out.  This is the unfortunate reality of waiting to see.  Praying all the way through this that everything will turn out ok. 

 So, to start, fluid status.  Well this has and will continue to be a moving target for us with Emma.  She responds so randomly to diuretics.  This makes it difficult when we are trying to establish some baseline and plan for the road ahead.  Also, what she needs now, may not be what she needs in the future, another frustrating and complex attribute.  So, we continue to work closely to try and find a delicate balance.  Today, we started the process of transitioning her off of continuous IV furosemide(diuretic) to intermittent IV furosemide.  This is an essential step to try to move her in the direction she needs to go.  

Second, her heart function.  Emma's heart definitely took a hit during everything that she has recently had go on.  What this means, is that her heart function is not the best.  It's not the worst either.  Somewhere in between.  What's hard is trying to answer the question as to whether or not it will improve again, stay the same, or worsen sooner than later.  So, all the doctors and teams here are really trying to work together to try to get her on everything she needs to be on medication-wise to improve her chances at her heart getting better.  Also, we have recently brought in another team called the Heart Function Team whose sole purpose is to try and micromanage so to speak everything about her heart and trying to improve it.  As you might imagine though, her heart not being in the best place is not easy to take.  But we pray and lean on God for strength during this, guidance for decisions we make, and for her heart to improve.  

Next topic, nutrition.  So, currently we are doing ok nutritionally on what she is getting.  Here is the hard part, this is not a long term type of plan for nutrition. But, until we get the other areas above figured out, this will kinda just have to work.  

Through all of this, we are getting lots of smiles from Emma, lots of fun times.  I am always so amazed by her strength as she goes through all of this.  Most of this would shake me to my core if it were me, but she takes everything in stride and just amazes not only Sarah and me, but all the doctors and nurses, etc. that come into contact with her.  For all the happy times, and her strength, I give God thanks!

We appreciate each and every prayer and thought for our family and pray every night that God blesses you in the way that you have blessed us!  God is good, all the time.. and all the time, God is good!

Prayer Requests:
1) Pray for her diuretics and fluid status that everything can be figured out.
2) Pray for her heart, that her heart function improves.
3) Pray for her nutrition.
4) Pray for the doctors, nurses, and everyone that takes such amazing care of her.
5) Pray for strength for Sarah and me.

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