Tuesday 29 April 2014

More questions than answers

Figuring out these little babies often feels like a jigsaw puzzle -- trying to fit all the pieces together until you can see the big picture.  Elyse has certainly been a puzzle these last couple of days. 

Her cultures and blood work all came back clear over the weekend, and so she was started back on her regular feeding schedule and moved back into an open cot.  Back to normal.  On Monday, however, the nurses still didn't think she was acting like her usual self and her bowel movements looked a little strange, so a follow up x-ray was ordered.  It showed that her bowels were not any better, and had even gotten a bit worse.  Fortunately they did not observe any pneumatosis (gas deposits in the intestinal wall) which a tell-tale sign of NEC, but they did observe some thickening of the bowel wall.  This could be a sign of NEC, but it could be a number of other things such as a bacteria or virus.

For those that may not recall an earlier post about it, NEC stands for necrotizing enterocolitis, and it is a very serious gastrointestinal condition in which the intestines of premature babies become infected, and in severe cases may perforate or rupture.  If caught early enough, antibiotic therapy is usually successful, but advanced cases may require surgery to remove necrotic tissue.

So her blood cultures have been repeated, just in case of a false negative the first time around.  They also sent off a stool sample for analysis and ran another complete blood count (CBC) test.  At this point the doctors are being very cautious and going to assume it is NEC until proven otherwise.  This means suspended feedings, back on intravenous TPN, and antibiotic therapy.  NEC is a dangerous disease in that they don't know what causes it, and it can progress very quickly.  That's why it's better to err on the side of caution and treat her for it, even if it doesn't end up being the diagnosis -- delaying treatment can mean a big difference in the outcome.

The puzzling part is that aside from the radiology findings, she is not showing any other clinical signs of NEC (swollen or distended belly, lack of bowel sounds, vomiting, etc).  Her blood work has also been normal, including her white blood cell count and level of C-reactive protein (CRP), which is an indicator of inflammation or infection.  Her stats have been stable for days, and she is acting like a grumpy baby who just wants to eat (and who can blame her).  As strange as it sounds, I almost wish one of these cultures would come back positive, only because then we would know exactly what we are dealing with and be able to move forward with a plan.  For now, it feels like we are stuck in limbo and treating a mystery we are still trying to solve.

On a positive note, Elyse turned 8 weeks old on Sunday, and has surpassed the 2 kilogram mark!  For fun, here's a side-by-side look at how much she has changed over the last 8 weeks...

2 comments:

  1. This comment has been removed by the author.

    ReplyDelete
  2. She looks great Sarah! So happy things are coming together, although sorry it's slower than you had hoped. Totally understand what you mean about knowing what you're treating... so much easier than stressing over the unknown. Thinking of you and checking your posts recently. Hugs to you and Elyse :)

    ReplyDelete