Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Thursday, September 29, 2011

Day 17 - 4:30 pm - Weaning....

So today Trey had his Fentanyl, which was used as both a sedative and pain reliever, drip turned off today.  They're attempting to try to wean him off of the sedative medications again, this time just doing one at a time rather than both the Fentanyl and the Versed at the same time.  Fentanyl is 100 times more potent than Morphine but effects don't last as long.  So they have taken him off Fentanyl and increased the Morphine he is taking.  The Morphine goes in through his feeding tube, straight to the belly.  The hope is that in a few days they can transition all of his medications to oral usage.  Once it seems as though he is comfortable off of the Fentanyl for a few more hours, they will start turning the Versed down again.  He is also receiving Methadone, via the feeding tube, to help with any withdrawal.  Not only does Methadone help with the withdrawal, it also does help with pain management and also stays in the system for longer periods of time than the other medications.

Sometime overnight Trey got his own little gown.  It's quite adorable!!  He also seems to really enjoy looking at the mobile that Child Life lent him.  He was really watching it intently this morning.

He had another echocardiogram this morning and the cardiologist came in to give us the results.  He said that his heart looks a tiny bit stronger on the echo, which is a great sign!  His ejection fraction went from 23% (4 days ago) to 30%!  Again, that's the percentage of blood that is being pumped out of his heart with every pump.  You don't want that number to be above 80% and "normal" is anywhere between 60% and 70%.  The cardiologist also mentioned that his EKG right now reads similar to an EKG of someone that had a heart attack.  Poor kiddo - he has an EKG that could be mixed up with an older man that had a heart attack! 

Also, I mentioned the other day his BNP number was 1568 (anything over 100 is a sign of heart failure) but what I failed to realize that when he was admitted on September 12, this number was 3000!  So this number has had a significant drop!  The cardiologist said today that he expects Trey to go home on about 4 different kinds of heart medications but he thinks that by the time Trey is 3 he will most likely be off all of those medications.  So, while the beginning of this journey has been really scary, after a few years this fix may cause him to have a complete recovery, which is great news.  

My mother came to the hospital with me today to hang out with Trey for the day.  We both got to hold him, which was really nice.  He stayed awake for most of the afternoon, which is good - he kicked his feet and moved his arms while he was awake so that's great exercise for his heart!

Trey and me

Trey and my Mom

Oh... and other important news... Hannah was Trey's nurse today!  It was so great to share such great milestones with her today... 30% echo and a poop with no blood in it!  I forgot to mention that too... Trey started having poops again yesterday, which is great (especially for him!).  He did have a diaper that tested positive for blood yesterday, which isn't too surprising considering he most likely had some damage in his intestines... but today all of his diapers tested negative, which is a good sign!  They're planning on starting feeds on Monday and as long as everything goes smoothly, we're looking to be discharged in about 2 weeks from now (that's if everything goes according to plan though... which, you know... doesn't always happen!).

1 comment:

  1. He looks great in these pictures, nice and strong. How wonderful that you are now able to hold him and that things are progressing in the right direction. You have been in my thoughts and I am wishing for a continued smooth recovery for Trey.