Life in the NICU is a roller coaster

Kristen and I usually spend between 4 and 8 hours per day in the NICU.  Most of that time is spent holding the boys, changing diapers, giving baths and talking with nurses and doctors about progress.  It’s great to see the daily progress with Jacob and Charlie, but it’s been frustrating to see Samuel not making the same progress.

Samuel was making some progress but this week he’s slipped back again.  He’s gone from 3 liters and 24% or 25% oxygen on the Vapotherm machine on Tuesday, to 37% oxygen and back to the CPAP machine today.  That’s a few steps backwards.  Sammy’s had a terrible time breathing and it’s been getting worse the past few days.  They did an X-Ray on Thursday and it showed a lot more “cloudy” conditions in his chest, meaning more fluid.

The ordered some dieuretics and started those on Thursday.  But after 2 days there was no noticeable change.  

Today they did  an echo and found he’s getting even worse.  The PDA is still quite large and the he’s getting a lot of blood flow to his lungs, which makes him work really hard.  The left side of his heart is working far harder than the right because of the PDA.

So now we’re moving on to Indomethicin.  This is the same drug they gave Charlie about 2 weeks ago.

The older the child is, the less-effective Indomethicin is.  We’ve been asking for several days as far as when we’d get this drug administered, and the doctor’s have been uniform in the fact that “wait and see” has been the best course of action.  But it’s clear now that Sammy is telling them this treatment plan so far is not working.  So Dr. Mikas asked if they can administer this.  We talked about risks, success factors and everything else and the short answer is this is Sammy’s best hope for help, outside of heart surgery.

We should know more about how this will work on Monday or Tuesday.  We’ll hope for good results with this treatment.  Hopefully this gets the roller coaster headed back up again.

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