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. 

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.

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. 

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! 

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. 

Post Op Update 4

Emma is recovering pretty well.  We have removed one of the chest tubes and a couple of additional lines.  Today we removed the pacing wires which is a good sign because that means her heart has been in a stable rhythm and so they feel like they wont need them from this point on.  We are thankful that they are able to do much of this because with everything they remove means we are one step closer to getting her home.  Yesterday, she was in a pretty crummy mood and she appeared to not feel well.  She has not been sleeping very well since being admitted and definitely not well since post op.  Thankfully, she slept very very well last night and I could tell that made a huge difference today.  She was way more interactive and smiley with Sarah and me and all the staff at Boston Childrens.  Also, her sleeping meant Sarah and I were able to sleep as well, which is never a bad thing! :)

We still have a ways to go before we can come home though.  She is still putting some fluid out of her abdominal drain and we are unsure what is causing it or if it will slow down.  Today, we have taken steps to try and see how much she can reaccumulate on her own without us draining it off.  

We still have a ways to go on diet.  She is still on TPN and lipids, but we have introduced some enteral feeds.  We are praying oh so hard that she will continue to do well with that, be able to tolerate the fat in the feeds, and grow bigger and stronger.  Because we are not where we need to be  at with the feeds, we are leaving one chest tube in and the abdominal drain in as well in case the feeds cause her to put fluid out in those locations.  We also have a lot of tweeking to do on her diuretics to get them just right.

All-in-all though, she is showing great progress.  She stood for the first time today post op.  She did so good with it.  We were all so very proud of her.  We are blessed to see the progress, and blessed to have such a great support system as well as team in Boston and in Dallas who take such great care of her.

Prayer requests:
1) Pray for her diuretic regimen.  That what we and the team come up with work for her.
2) Pray for her ascites, that it continues to improve and eventually stops draining.
3) Pray for her heart.  That it continues to improve after this surgery.
4) Pray for all the team in Boston that is taking care of her.
5) Pray for patience and strength for Sarah and me.
6) Pray for her lungs, that they continue to stay clear.
7) Pray for her feeding, that we figure out something that will work for her long term.
8) Pray for her therapies, that she will continue to progress with those.

As always, we thank each and every one of you for your thoughts and prayers on our behalf.  May God bless each and every one of you the way that He has immensely blessed us!

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

Scott

Post op Update 3

It has been a little bit of a crazy 24 hours. Emma was making slow and steady progress yesterday. They were able to completely take her off of one of the inotropes, epinephrine, and significantly wean on her dopamine.  They also took her completely off her morphine and versed drips.   Emma's numbers were looking very much improved and the plan was to optimize her overnight and pull the tube this morning; however, overnight, her belly became more distended, she looked more puffy, and some of her numbers were up.

So today has been a bit of a juggling act getting her regulated.  They began a lasix drip to try to pull off excess fluid.  They also decided to leave her breathing tube in until they could adequately assess the drainage tube issue.  In the meantime, we went back up on sedation and got a heart Echo to see how her function and tricuspid valve regurgitation were doing.  

This afternoon, the IR doctor who placed  the drain brought up an ultrasound machine to try to determine why the drain was not draining much since her belly was a little bit bigger.  To all of our surprise, the reason her drain wasn't putting out much was because there is very little fluid in her abdomen.  It is in a good place, so we will leave it in for right now to let what little is in there out of there. So, the culprit for the extended belly this time is extreme gas and bloating.  We are venting her belly to try to help this pressure.

After her sedation/pain meds wore off this evening, we pulled her vent tube.  Now we are trying to get her to cough up all of the junk in her lungs and sit up in her chair to help with her Glenn headaches.  

Please pray for:

1. Her lungs to stay open and clear

2. Her belly to not be so bloated 

3. Her mood to improve 😉

4. Her heart function/tricuspid valve to look good

5.  For her recovery to continue to improve 

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