Post Cath Update 2

This will be brief....Emma had a rough night and is fighting very low blood pressures despite being on medications that help boost blood pressure.  Emma is also running a fairly high fever that we are having problems bringing down.  Also, Emma's belly has gotten huge...and of course we don't know why.

Today's plan is to take Emma to IR to attempt another PICC line and try to determine why her belly is so big.

Overall, it has been a very frustrating night.  We hate that Emma has taken so many steps backwards.  

Please pray:

1. Blood pressure will stabilize

2. Belly will decrease in size

3. A successful line will be placed

God is good!  We don't always understand the plan, but HE is good!  

Post Cath Update

This is going to be a very brief update.  Emma is stable after her cath procedure.  She is still sedated and intubated (breathing tube still in).  We have yet to hear what the plan is for the rest of this week or in the future.  Right now, we ask everyone to continue to pray for her and us as we try to figure some things out.  A more detailed update will come more than likely later in the week.

God is good, all the time.  And all the time, God is good.

-Scott

Cath Update 2

Emma is doing well and is stable in the cath lab.  They are currently coiling collateral veins (veins that form to reroute blood to other places, often these are not good because it makes blood go away from the right paths).

The ENT scope did reveal that her left vocal cord is paralyzed.  We will learn more about what this means for Emma later in the day.

God is good!  All the time!  God is good!  Please continue lifting our girl up in prayer. 

Cath update 1

They just took Emma back to the cath lab.  They will do the ENT scope, cath, then place the PICC line.  Thank you for the continued prayers.

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!

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




http://www.booster.com/team-emma-tshirt (YS-Adult 3XL)

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.