Cath Update 2

Emma is doing well.  They were able to successfully place the abdominal drain.  She is now undergoing the cath.  The cath team was able to get access on the right side and Emma is tolerating the anesthesia well.  Prayers for successful cath, good heart pressures, and smooth recovery.

Cath Update 1

This silly girl just went back for her cath and new abdominal drain.  Please pray for her as these cath numbers will help us make the next surgical procedures.  

Boston Update 2

It doesn't seem that long ago when we were looking out the same windows on the 8th floor looking at snow falling.  Today is a snowy day, and a perfect day to sit down and type an update for the blog!  Emma is doing pretty good all things considered.  She is dealing well with everything that she has to go through being that she has been in the hospital for months now.  As far as her care goes, Boston is doing a very good job trying to arrange and figure out everything for the near future.  We are scheduled currently for a heart catherization procedure on Monday.  We initially were scheduled to have this procedure on Friday...but they had a cath lab (location where they do procedures) down and out, and then their electronic medical records software went down as well.  As a result, our cath was canceled as we were one of the last cases for that day.  Barring that all goes well in the cath lab and we find out that she is good to go for the next surgery, she will more than likely undergo heart surgery on Tuesday.  This weekend will be pretty uneventful while we prepare for everything on Monday and potentially Tuesday.   They are also trying to arrange a new PD drain placement (Emma's is not working), as well as a PICC line change (to give more access) on Monday as well.  We will update more on Monday before, during, and after the procedure. 

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

Specific Prayer Requests:
1. Emma can stay infection free.
2. The team(s) can work together to develop best plan for Emma.
3. Emma's pressures will look good in the cath lab so we can move forward with surgery.
4. Pray for the doctor's, nurse's, and all her team here at Boston that are taking care of her.
5. Pray for her upcoming surgery if the pressures look good.  Pray that it is successful and she has a good recovery.

-Scott

Boston Update 1

So to give everyone an update: Emma'a was flown via children's health jet yesterday morning to Boston. We arrived in Boston yesterday afternoon and began a vast array of testing. Since we have been Boston, Emma has had two heart echoes, multiple lab draws, x-ray, medical consults, and several other things to come.

 We will be talking with the Cath team to determine the best date to take Emma into the Cath Lab to look at her heart. As soon as I have more details on that I will update the blog.

 As of right now, Emma and I are doing our best to get rest,talk to lots of doctors and other medical personnel, and stay entertained LOL. 

We appreciate the prayers as we move forward to try to get Emma everything she needs. 

Below is our Address while we are here:

 Boston Children's hospital 

ATTN: Emma Stewart

8 South

300 Longwood Avenue

Boston, MA 02115

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

Made it to Boston

We made it to Boston

Back to Boston

There is so much going on and don't even know where to begin.....

First of all, Emma's heart function and tricuspid valve regurgitation(TR) have taken a hit.  Why??  That is the million dollar question.  Last Wednesday, the 8th floor staff got an echo that showed worsening function and TR.  Emma was also quickly accumulating fluid in her abdomen, so it was decided to move her to the Cardiac ICU, put in a abdomen drain and start her on a medication to aid in her heart function.  At this time, Boston was also contacted and arrangements were starting to take place to transfer Emma back to Boston.

Fast forward to today.....

Emma's heart echo yesterday showed mildly improved heart function and worsening TR.  Basically, Emma needs to get to Boston to get a heart cath and potentially heart surgery.  She continues to have persistent accumulation ascites as well.

We just heard  from insurance on official approval for Medical transport and now need word from Boston that they have an ICU bed available. 

There are a lot of unknowns in our near future, so we appreciate your prayers as we move forward to determine a plan to help her precious/fragile heart and body.  

Prayers also for:

1. a safe transport

2. Wisdom for Boston medical/surgical teams

3. Strength and calming for Emma

4. Peace and understanding for Scott and 

5. Successful testing and procedures 

Prayer Request

Emma got to take a stroll around the unit today.  

We learned some new details today about her health that we are still trying to process, but in the meantime, please pray for our sweet girl....some hurdles to conquer in the near future.