Inhaling Again

Kiran has been sweating.  Initially, we were pretty sure it was because he was coming off the Ativan (the mild sedative we were working on slowly withdrawing him from because the little turkey had a rough time coming off the morphine and versed he had in the hospital).  But he has now been completely off of that for a week and a half.  He has still been sweating.  Oftentimes, he sweats around a feed – whether or not he is being tube-fed – so whether or not he is actually putting any effort in to eat.  But it also happens at other various times – sometimes when he is worked up, sometimes when he’s just resting.

I have been telling myself it’s not cardiac-related, because I don’t want it to be.  He has had tummy issues since his surgery.  His digestive system still hasn’t regulated itself, and I can tell he is struggling with the acid reflux and some tummy pain at times.  I was trying to make the sweating about that.  And maybe it is.  I can still hold onto that, a little bit.

Because his oxygen saturations, even during his sweating episodes, have been 98-100.  (I love that we have the pulse ox at home to spot check!)  He isn’t having any retractions with his breathing, his coloring isn’t changing….I wasn’t noticing any other cardiac symptoms, so it was easy to push it off as something else.

Until I remembered today I should also be paying attention to his heart rate when I hook him up to the pulse ox.  And his heart rate has been sitting in the 140s-160s.  This is high for a baby his age at rest.

I just talked to Dr. M, our cardiologist, and we have an echo in the morning to see if his heart is working properly.  It’s an important first step.  I am really glad Dr. M took my concerns so seriously and isn’t making ME sweat this all weekend long.  Also, for good measure – because it just makes me feel better – we are also taking him to see the pediatrician tomorrow afternoon, to get his tummy and everything else checked out.

I know it – I’ve said it – I’m now living it : There Is No Cure For CHD!  Our story doesn’t end with his “full repair” surgery.  It continues on.



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