Monday, July 13, 2015

A big catch up: HOME

Wow! It has been a whole month since I have updated the blog. Time flies when you' the hospital.  What to say to get you caught up? Basically, life has been a lot of the same old same all since we arrived from Boston. The biggest issues that we deal with are
 fluid issues, feeding issues, abdominal girth issues, infection issues, electrolyte issues, and cardiac issues. No biggie right?  It would seem like we were getting very close to gearing up to go home when of course there had to be something that prohibited that. This time the culprit at hand was C-Diff.  If you don't know what C-diff is, I encourage you to Google it....or on the other hand,maybe not (ha ha)!  Basically, C-Diff causes a lot of diarrhea that is very contagious.  In a kiddo like Emma who has been on a long-term antibiotic course and is also taking PPI's including Prilosec and Zantac, C-Diff can be very difficult to eliminate. When we started noticing the frequent diarrhea, we also noticed that her abdomen was distended and she seemed very uncomfortable. After the abdominal ultrasound showed minimal fluid, The team decided to send her stool to check for bacteria. At this time, Emma also started having issues tolerating her formula.  It wasn't that she was vomiting, or retching or gagging, but she was so uncomfortable that she would scream, refused to sleep, and was just overall very cranky. The team decided to run Pedialyte only and give her gut a little bit of a rest. At this time they also started an antibiotic to help with the infection. We slowly worked up on her freds and started her back on a more elemental formula to hopefully cause less stress on her G.I. tract.  However, when we got back up to full feeds she started having the same issues again so we are now at three quarters strength feeds throughout the day and night of the elemental formula. However, she was still having frequent loose stools after the first 10 day course of antibiotics, so the team decided to to give her a very long tapered course of antibiotics to fully eliminate the bacteria. 

Since I wrote the above paragraph, (I have started and stopped this post multiple times) Emma has been able to come HOME!!!! Going home looks a little different this time. Going home includes more medications, more tubes, mines, and wires.  None of that really matters though because it means that we can be home for the first time together in close to seven months. Yes, we had a few days at home in February but those were some very miserable days as Emma was very sick and did not feel well.  we are anxious yet excited about this next step in our journey. We know that the likelihood of us returning back to the hospital is very large. We hope and pray they were able to stay Home for a while before we have to enter again.   We are doing our best right now to get settled in at home, restart therapies and nursing, go to weekly cardio appointments, and overall getting our life organized.  

Emma is still in heart failure, she is still dealing with some mild abdominal ascites, and is still being treated for C-diff; however, she is happy, active, and learning more and more every day. Scott and I are truly amazed by her tenacity.  We are truly blessed to be able to be her parents even in the hard times. We continue to ask for your prayers as we walk this journey with her.  we know that God has a plan for her life and we trust in that plan. As always, God is good! All the time! God is good!


  1. I am a pediatric ICU nurse and so I hope that what I say resonates because I have seen some really hard and tragic things and Emma's case is as complicated as any I have ever seen. She astounds me! That smile, the defies logic. She should be miserable. She should be crabby. She has every right to be angry and withdrawn. And yet she's not. There is really only one explanation. She knows she is loved. Loved by God. Loved by her parents. Loved by her extended family. Loved by her caregivers. No amount of technology or advanced, high-tech medicine will ever substitute or replace the very real, clinical value of love. That smile, it blows my mind each and every time.

    God bless this sweet, smiley girl!

  2. Thank you very Steady info ... hopefully more successful.
    Pengobatan Herbal Jantung