Wednesday, January 9, 2013

Two steps forward, one step back...

Welcome to the life of a heart baby...two steps forward, one step back. That has been the story of our life the last few days.

Our last post was full of positive steps forward...medications down, tubes out, wires out, good stats. However, we have had a few steps back the last few days.

One, that darn breathing!! One of he side affects of a major surgery is the build up of fluid on the lungs. Joshua had quite a bit and it even caused the bottom part of his right lung to collapse a little. Since they extubated him, they have been trying everything to get that lung healthy. Right now, he is on a c-pap machine, just like someone with sleep apnea. This machine pushes air with high pressure to help keep the lungs open. You can tell how he feels about having a tornado blow up his nose in the picture below.  It does seem that it is not getting any worse, but it is just taking forever to see any improvements.  I really think this is going to be what keeps us in the ICU for the longest.

Darn C-Pap machine!

Another scary thing that happened was an irregular heart rhythm.  When this happened the first time, it was one of the scariest days of us being here.  He was getting his breathing treatment when our nurse noticed his heart rate above 220 (normally, it is between 130-160).  When it didn't come down quickly, she called the doctors in and they noticed the EKG (you know that squiggly line that shows your heart beating...that actually means something!) was abnormal.  He was having something called SVT.  Basically, the upper part of his heart was beating faster than the bottom part, so blood was not circulating properly.  In order to get it back to a normal beat, they had to inject a medication that basically stops the heart for a millisecond and then it starts beating again at a normal rhythm.  When they use this medication, they have to be ready in case the heart does not start again.  So, they brought the "crash cart" right outside the room.  This is the cart that holds the infamous "shocker" so they can shock the heart back in case it didn't start on its own.  Fortunately, the medication worked just like it was suppose to.

You can imagine I was a little overwhelmed with all of that, since I was sitting in the room when it happened.  I spent the rest of the day decompressing with music and watching TV...and it really did take all day to get my heart rate down and my mind to stop racing.  It definitely made me nervous about life at home with this little guy...when I don't have the nurses, doctors, and monitors to tell me what is going on.  But, I guess I will just have to trust that the Lord will help me with all of that.

Anyway, they were able to figure out what happened with his heart.  Apparently, Joshua's heart has an extra piece of tissue on the edge of his atrium that conducts the electrical impulses of the heart.  When the heart beats just right, this extra tissue gets the impulse and cases the atria to get into an abnormal beat.  The cardiologist has him on a medication that decreases the chances of this happening again, but he is monitoring everything by having a 12-point EKG done every day.  He is quite the looker with all the leads on for that...

All the leads for is 12-point EKG.  I sort of think he looks like something out of a comic know the bad guy in Spider man 2?



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Joshua Kent Ipson was born December 1, 2012 with a very complicated combination of congenital heart defects. After 2 1/2 months of fighting for his life, he passed away on February 13, 2013. We invite you to share our experiences as we grieve his loss, rejoice in God's plan, & keep Joshua's message of hope alive.
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