Sunday, December 21, 2014

Two Down....One to Go

Well, Emma got two of her chest tubes out this evening so I finally got to hold and snuggle her more. Praying her X-ray/respiratory status look good in the morning.

Princess Cart Parade

Emma in her princess cart headed to X-ray!  Really hoping to get some chest tubes out today.  

Saturday, December 20, 2014

Update for 12/20/14

So Emma had a good day.  It seems to Sarah and I that each day she is getting stronger and is becoming more comfortable.  The big thing for today was the clamping of one of her chest tubes that has been draining the majority of fluid.  I caught her surgeon in the hall this morning (I am not sure if he was on his way to see us) but he walked with me all the way down to her room.  He listened to his fellow reading off the numbers of drainage but then looked at us and asked, how do you think she is.  It's amazing having someone with such a great amount of education and experience, willing to come down and take time out of his, no doubt hectic day, to see, number 1, how Emma is doing, and number 2, is willing to listen to our input.  What a blessing! We ended up making a plan to attempt to clamp the chest tube draining the most volume and see how she did.  In theory, if she does well with this and tolerates any fluid that accumulates, the chest tubes can come out.  So we are praying this is the case as these tubes cannot be comfortable for her to have to deal with everyday.  We have increased how much nutrition she is getting as well, and she seems to be tolerating it well.  All in all, it was a good day, filled with lots of smiles, laughs, naps, and some, I mean many, sassy moments.  As I type this, our sweet little girl is sleeping soundly in her bed. :) God is good, all the time.  And all the time, God is good!

Prayer Requests:
1) Pray her respiratory status stays stable with this chest tube clamped, and that we can get the chest tubes out soon.
2) Pray she continues to tolerate increases on her nutrition, and pray that she has a desire to start taking food by mouth again.
3) Pray that she is as comfortable as she can be with everything going on, not too stressed.
4) Continue to pray for all the people that have a role in her care.  They have helped her out in so many ways and we are so very thankful to God for each and every one of them.
5) Pray for Sarah and me, for the strength that we continue to need.

Thank you all for the thoughts and prayers!


Thursday, December 18, 2014

One week postop

As I lay here next to my sweet girl, I cannot believe that it has been a week since her life saving open heart surgery. Her postop recovery has been remarkably smooth. While there have been various hiccups along the way, including the massive chest bleed, Emma has recovered from this extensive surgery very well. I am once again in awe of our God's amazing Love for our family. 

We still have a little ways to go to get Emma closer to baseline. She still has three chest tubes in that we are hoping to get two of those removed today. However, Emma has been off of oxygen since  around four this morning and is doing well. This is a huge blessing. We have a ways to go on her eating, physical activity and sleeping, but I know that this will simply take time as her body is still healing from the major surgery. 

We are hearing that Emma will go to the recovery floor today as long as there is a room available. It is unreal to us to think that just a week after the surgery we could be moving to the recovery step down floor. To be perfectly honest, we are nervous about this but excited at the same time. 

The doctors had been discussing taking Emma back to the Cath Lab before we left to go back to Texas, but the new consensus that we're hearing is that they want us to come back in around 3 months for that procedure since Emma is doing well. Obviously, if for any reason they think they need to look at things or fix things before we go home then that is what we will do.

We are so very thankful to all of you who continue to pray for sweet girl. Your prayers give Scott and I peace  during this crazy unpredictable medical journey.  We are also extremely grateful to this medical team at Boston Children's  who gave Emma a chance. They have been very understanding, helpful, and caring to our family. We are also thankful to her Dallas team who have checked on Emma and supported us as we worked to get Emma the help she needed. I would also be remiss if I did not thank our family, friends, and church family back home who have helped and continue to help in  so many aspects of our lives. We are blessed and we serve a faithful God.

Prayer Requests:
1. That Emma will begin eating more.

2. That Emma's body will not be accumulate fluid after her chest tubes have been removed.

3. That Emma can rest better at night.

4. That Emma will regain her strength so that she has the stamina to move in play.

5. That Emma's heart repair continues to do well to support her body.

As always, God is good! All the time! God is good!

Tuesday, December 16, 2014

Evening Update

Emma is doing pretty good tonight except being what appears to be uncomfortable and unable to really sleep or rest.  All in all today, she has made really good strides forward.  She had a chest tube removed, was able to come off of CPAP way faster than anticipated and be put on a nasal canula, ate a little food, has had decreased drainage from chest tubes.  Tonight, she is uncomfortable though and running a low grade temperature.  So, we are going to start looking into possibilities for what might be causing this temperature, while trying to also get her to rest.  Right now, Sarah is laying in bed with her and they are both watching The Voice.  This is a short update, I know, but we will update more tomorrow. 

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

Prayer Requests:
1) Pray we figure out what is causing this temperature.
2) Pray Emma becomes more comfortable.  That pain is eased.  That we can help her in any way possible with this.
3) Pray for the medical staff taking such great care of her.
4) Pray that she continues to progress towards not needing these chest tubes.
5) Pray her lungs continue to clear up and that she is able to stay on just the nasal canula.
6) Pray for her nutrition that she is able to keep eating and digesting well.

Thank you all for the continued thoughts and prayers!


Morning Update

Emma had a better night last night. We are trailing her off of the CPAP to see how she is going to do.  Her X-ray was improved but still has some work to do before it is back to baseline.  She has seen Occupational therapy and will see physical therapy soon.  Small steps in the right direction.  Please continue praying for her as we move forward in her post op care. 

Monday, December 15, 2014

Brief update

Emma is resting well tonight.  Her bleeding has almost stopped, and we are praying her X-ray is clear of fluid in the morning.  Thank you again for the prayers.  We are praying tomorrow is a much better day for our precious girl.