The Waiting Game

Waiting Game:

Right now, we are in one HUGE waiting game.  Emma was officially placed 1A on the transplant list on January 4^th, her 3-month birthday!  They have been running some tests to see why Emma is having problems gaining weight and processing high caloric amounts of food.  The main test is a stool study called Alpha-1 Antitrypsin.  We have sent off three of these studies.  The first one came back elevated, the second one came back normal, and the third one came back elevated again.  So, the doctors have come to a somewhat unanimous conclusion that Emma has Protein-losing enteropathy or (PLE).  PLE is a rare condition characterized by a loss of serum protein into the gastrointestinal tract resulting in hypoproteinemia, which can be complicated by edema, ascites, pleural and pericardial effusions, and malnutrition.  However, out of all of the doctors and nurses we have spoken to, only two of them (one of them being the surgeon Dr. Forbess) have EVER seen this in an infant.  PLE in an infant is very RARE…….like probably one in a MILLION!  To be honest, Scott and I debated whether or not to share this with our blog followers because the information you will find is for older kids and adults.  In fact, we have known that this was a possibility for a while but chose to keep it to ourselves until we learned more about it and its treatment.  Just like us, people like to Google when they do not fully understand the terminology of certain medical disorders.  We ask you to PLEASE REFRAIN from doing that this time.  Basically, Emma has had pleural effusions (or drainage from her chest cavity) since post Norwood, poor weight gain, and a swollen abdomen, which are all signs of this medical condition.  We have asked what the treatments are for it and the answer is steroids or heparin; however, neither are GREAT or REALLY PROVEN to treat it well, so the BEST solution is TRANSPLANT.  Since this is the route it looked like we needed to take anyway, we are doing what we need to do to best help Emma. 

So, what has been going on lately.  Not much.  We are trying to wean on Emma’s vent when we can, increase her feeds when she can tolerate it, and work with her on her physical development.  They did put Emma on a two-week steroid regiment, which ended today.  Emma did swell some with the steroids and became quite irritable and NOT SLEEPY!  We are hoping these symptoms go away soon! 

Scott is working more and I am here with Emma.  We miss him so much when he is gone, but appreciate the dedicated dad/husband he is.  We want to thank all of those that are giving us encouragement, sending cards/gifts, calling, and most of all praying for us during this journey.  If I have not thanked you or sent you a THANK YOU please know that we are SINCERELY THANKFUL for all that you do!

Specific Pray Requests:

1.     Pray that Emma can gain weight and nutrition

2.     Pray that Emma can come off the vent

3.     Pray that Emma can have good blood gases

4.     Pray that Emma can stay infection free

5.     Pray that the PERFECT heart will be generously given to Emma

6.     Pray that the Doctors can figure out the best plan for Emma

7.     Pray for the future donor family

8.     Pray for the doctors, nurses, and staff in charge of Emma’s care

9.     Pray for the other kiddos: Ella, Ella, Lyric, Blake, Justin, Haven, etc. who are fighting their own health battles

10. Pray that Scott and I can stay strong through this process

God is Good!  All the Time!  God is Good!  

Chunky Monkey! :)

Emma with her official transplant letter!

Emma's laughing face!

Mommy (Sarah)