Monday, April 27, 2015

Fork in the Road: Back to the Cath Lab

It was a busy week for Miss Emma.  The team has been working to try to optimize Emma's cardiac function while managing her fluid balance.  This has proved to be a tedious task.  Emma's kidneys are not really appreciating the medications (diuretics), so we can't pull off as much fluid as we would really like to pull off.  The team also feels like we are at a fork in the road.  We are guessing on certain numbers at this point, and those numbers really effect how we proceed and how we medically manage Emma in the interim.  Therefore, the decision has been made to send Emma to the cath lab tomorrow.  As of right now, Emma will be second case.  Emma will also have a couple of other procedures done in the morning.  The ENT staff will scope her to check her vocal cords since all of her intubations to make sure it is safe to try to let her eat.  They will also be putting in a new PICC line because her old (that was placed in Dallas) started leaking today.

 So, tomorrow will be a big day for Miss Emma.  It will also provide information that will help Emma's team, and us, make the best decisions moving forward.  Thank you for the continued prayers as we move forward.  We are obviously anxious for what information will tell us, but we know that God is in control and that he will lead us through this next storm.  God is good!  All the time!  God is good!

Tuesday, April 21, 2015

New Emma T-shirt (toddler version) Heart Hero

Here are the new Team Emma t-shirts! A big thank you to Stephanie Mora for designing them for us. The really neat thing about these shirts is that the "heartbeat" on the front is Emma's actual EKG reading....her heartbeat. All the instructions are on the website, but let me know if you have any questions. The shirts are really soft and comfy, but run a little small so read the sizing chart carefully.

New Emma T-shirt (toddler version) Heart Hero (YS-Adult 3XL)

Monday, April 20, 2015

Weak Heart...Strong Spirit Part 2

Well, it's been a while since we have updated our wonderful, loyal blog followers.  Our days are very busy trying to make small steps to improve Emma's heart function. 

We moved to the recovery floor last Thursday and were settled into the nice new side.  The heart failure/function team continues to drive Emma's care at this point.  They are spending a lot of time focusing on  Emma's fluid balance, nutrition, and electrolyte status.  All of these factors play a direct role in how her body is reacting to her depressed heart function, as well as, how hard her heart is having to work to meet her body's demands.  We are literally walking a very fine line on what Emma does and does not tolerate.  One day, her medications are perfect for her and the next day we are chasing our tails.  It can be extremely frustrating, and yet we know that this is how it's going to be until her heart is functioning more efficiently and her body heals from all the recent surgeries.  

One thing that has not escaped my precious daughter is her sassy attitude. We have been pushing her to get in her stander, do physical therapy, occupational therapy, and spend less time with her electronics. She is not a huge fan of these new rules, and she proves that by pushing Scott and I.  The last two days, despite having her favorite things taken away from her, she waited until the last five minutes of her stander time to do her occupational therapy tasks that we've been trying to get her to do for an hour.  It's good to see that fight in her; however, she has had her fair share of timeout times over the last couple of days lol.  Being four and stuck in the hospital for months is not a good combination.

We haven't really heard the "home" word lately, and Scott and I are having to cope with that possibility. We are not sure how long it's going to take her heart to recoup, or if it's going to recoup enough to support her little body, but in the meantime, we pray and push forward.  

We really appreciate all the continued support, prayers, and encouragement. It is not easy being separated as a family or being away from home, but we feel the love and support from miles away.

Special announcement:
We have had several people ask about new team Emma shirts. Be watching the blog soon because my wonderful, fabulous, super-talented best friend has designed new T-shirts and they will be for sale soon.  

God is good!  All the time! God is good!   We continue to praise him in this storm. 

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.

Saturday, April 11, 2015

We Need Pee

 After a decent day yesterday, Emma is struggling with renal (kidney) function today.  Please pray that her kidneys will perk back up.  We are hopeful that she was/is dry and that one of her meds she was on has aided in making her kidneys unhappy, so that the changes we made today will help improve the function.  She needs to have more urine output so that she is not so puffy. 

Thursday, April 9, 2015

Finding Balance

This is a quick post...not much to tell. The goal for today has been to pull fluid off Emma's body to see if less fluid will decrease the work load in her heart.  It has been a slow process, but she is not as fluid overloaded as she was yesterday, but we still have a long way to go.

Her stomach is bigger and we just knew that since her drain came out, she had accumulated more abdominal fluid; however, that is not the case, so we are at square one with figuring out why her belly is so big.

Basically, Emma needs to eliminate a lot of fluid off her little body, so we can see where her heart is going to settle.

Thank you for the continued prayers as we move forward into the unknown.

God is good!  All the time!  God is good! 

Wednesday, April 8, 2015

Rough day

Day 98: Emma could really use your prayers.  After a couple of rough days, we found out the Emma's heart function has worsened.  We were moved back to the CVICU this evening and Emma was started on a med to help her heart.  There will be more testing and information to come over the next few days.