Sunday, October 24, 2010

To Get You Caught Up....

Ok, I know that many of you are probably very curious about the happenings of the last few days.  Emma has a way of keeping the doctors, nurses, and staff on their toes.  On Friday, they decided that they wanted to put in a PICC line for a more long-term access to Emma’s veins.  Emma has had intercardiac lines in for 19 days and they really want to take them out, but need another point of access before they pull them.  They took Emma down to the room where they put in the PICC line around 3:00pm on Friday.  This is an event in and of itself.  They have to take all of Emma’s monitors and medications with them, so it takes about an hour just to get her ready to transport.  Anyways, when they put in the PICC line, it triggered Emma’s arrhythmia and her heart rate shot up into the 200s.  They pulled the PICC line out and as they were giving her medication to try to slow her heart rate, she pulled herself out of it.  So, needless to say, it was an eventful day.

Well, on Saturday, Emma had a few more short runs of her arrhythmia.  She was always able to pull herself out of them, but it is still scary when they happen.  Yesterday, the doctors decided to test to see if her intercardiac lines were truly working.  Although they have done two “bubble” tests on them, they still felt like something wasn’t right, so they ran her lipids through them to see if any of them were leaking.  Sure enough, one of them were.  Now the doctors are even more anxious to get those lines out.  They decide that they will put in a broviac line in her leg to gain the access needed to run meds once her intercardiac lines are out.  We meet with the people that will be performing the procedure and sign consent.  We are told that this will be done on Sunday.  Well, once again, Emma threw the doctors a curveball.  Emma has an infection.  When a child has an infection, they do not want to cut open her leg and insert a semi-permanent IV access line.  So, they started Emma on an antibiotic to get the infection cleared up.  Also, I come in and notice that Emma’s feeds have been stopped.  Obviously, I am curious as to why this is.  Apparently, based on some chest tube drainage, they believe that Emma is not able to break down the fat in my breast milk, so they stopped the milk and gave Emma sore sort of medicine that is supposed to help with the breaking down of fat.  Last night; however, was fairly uneventful and calm.  Emma enjoys being in her bed and really does not like to be messed with.

Today will more than likely be a busy day for Miss Emma.  They were going to put in today what they call a Broviac catheter, which is a semi-permanent IV access, but since she has this infection, they have decided to postpone that to possibly Monday or Tuesday.   Their main concern is getting out the intra-cardiac lines in her heart and in order to achieve that, they need a new semi-permanent IV access.  In order to do that, they are going to attempt to put in a Femoral line.   If this works, they will be able to successfully pull out her intra-cardiac lines.  They are also concerned about her nutrition again as she is unable to have breast milk.  They are thinking of putting her on a special formula instead to give her more nutrition.  So, we will see how today goes.  Lord willing it works well and she can get those intra-cardiac lines out and get some good nutrition going! 

Specific Prayer Requests:

1)   Pray for this Femoral line today to be a success and that her heart tolerates it well.
2)   Pray for her nutritional status to continue to improve with these changes that they are currently making.  Pray that Emma's lung functioning.
      Pray for her body to start absorbing and utilizing fat properly.
3)   Pray for the doctors, nurses, and all the staff that are looking after Emma.  Pray that God guides their hands as they care for Emma.
4)   Pray for her heart to continue to be free from atrial flutter. 

5)   Pray for Scott and me, that we will continue to have strength and peace about everything that is going on.,,,

S    Sarah and Scott (Emma's Mommy and Daddy)


  1. So sorry that you two and Emma have had to struggle with so many challenges this week. It is obvious that you "can do all things through Christ Jesus, who stengthens" you; otherwise, I don't know how you'd bear up under the pressure. We are praying that Emma's nutritional problems are resolved, that IV access is gained, that her infection clears, and that through all of this, with God's help, you will find a way to rest...and that little Emma can get some peace and quiet somewhere along the way. Be sure to give her your hand to hold; I'm sure she likes knowing that Mommy and Daddy are so close by at all times. We are so proud of what awesome parents you are! God bless you 3!
    We love you to the moon and back, and to infinity and beyond!
    Nana Jana, PaPa Steve, Auntie Stacey

  2. Praying that Emma will be able to have done what is needed and be healed of her infection. Praying she will be able to have nutrition. Praying for mom and dad too. It has to be draining you. Praying God fills you back up. Thanks for updating. I know it takes time away from everything.

  3. Sarah, when Jake had his first surgery he also was unable to process breast milk for a few days. Usually once they put them on the special formula they leave them on it for 6 to 8 weeks....thankfully I had a cardiologist who let me try breastmilk again once his heart started working correctly and we got the pace maker turned off. I think that once the heart starts working right everything else falls into place. Special prayers for you all...I hope she gets better soon and gets back on the mend. Lots of Love- The Steele's .

  4. We love you and continue to pray for Miss Emma and you and your family. Kendall and Darla

  5. Many prayers coming your way. Miss Emma is a little fighter and even though she has had a few setbacks...she will fight through them as well. I will also keep you and Scott in my prayers as I know how hard it is to watch your little girl go through so much.