Dr. Doom Comes Through…

Nolan was doing well in progressive care, but due to him being intubated for so long, he had pretty much lost his sucking reflex and bottle-feeding was out of the question.  Speech therapists would come in from time to time to work on it, but he was getting all of his feeds via an NG Tube, which went into his nose and down to his stomach.  Nolan hated that thing: he would always try to pull it out, and when he would pull it out even an inch, he’d barf everywhere.  Nasty.  And he was a major league ninja about it too, you’d unswaddle him to change his diaper and BAM, that little hand would whip up and grab it.

According to the staff, they wanted him to take 75% of his feeds by mouth before not considering a feeding tube any longer.  Unfortunately that wasn’t going to happen.  I happened to be in the room one afternoon with Nolan, on a weekend, when a GI doctor came in to chat with me about what would happen with Nolan’s feeds.  He talked about something called a Gastronomy Tube, or G-Tube, which would have to be surgically placed.  Oh great, another surgery.  He assured me that this would be a safe procedure.  I know the surgeons said that losing the suck reflex is common after the Norwood Procedure, but I really didn’t think it would go this far.  Basically they’d have to go down his throat and then put a tube through his skin directly to his stomach.  A tube would be sticking out, which we would use for feeds and medications.  It was pretty sad to see Nolan go for another procedure…but I was hoping that he’d get this done the first shot.

When Nolan came back, he was asleep and had the tube sticking out.  It was held in place with this round disc, and it looked huge on him.  I felt bad for my little guy…he’d been through so much.  I was told that he would be in a little pain once the pain meds wore off but that he was scheduled for some tylenol for pain.  And you could tell once the pain meds wore off because he was CRANKY.  I tried my best to console him: talking to him, singing to him, consoling him, playing him music.  Nothing worked.  Then it was time for the physician on duty to do their rounds.  And just WHOOOO was on duty this day?  Doctor freakin’ Doom.  If you remember from an post early on in this blog, “Dr. Doom” is the doctor who confirmed that Nolan had HLHS and she did it in a completely cold, soul-less manner.  I REALLY didn’t like this doctor and there the doctor was on duty while my son writhed in misery.  GREAT.  The doc got an update from the nurse before walking to give him a look-over.  I had my guard up, like I was ready to go to war.  She turned to me and asked if I had any questions and I said, “I just feel like he’s miserable and in a lot of pain and he’s been like that for awhile.”  She looked at Nolan again, then turned to his nurse and asked about meds.  The nurse said he was scheduled for Tylenol a little later and Dr. Doom replied, in utterly mind-blowing fashion, “Well I can’t see why he can’t have some now.  He’s obviously in pain.”  Then she touched Nolan’s foot and said “Feel better, Nolan, you look great.”  And then walked out.  And Nolan got his meds.

What the what?  I was stunned.  This person who I so reviled for being terrible to us just did something nice for my son.  Don’t get me wrong, it wasn’t super warm or friendly, but it was the right thing to do and she did it without thinking twice.  I was shocked.  So did she redeem herself?  Not sure.  Sometimes I acted stank about her around other people, but sometimes I didn’t say anything at all.  It was an interesting introduction to the subject of forgiving someone…it planted the seed in my mind.

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on December 9, 2013, in Progressive Care and tagged , , , , , , , , . Bookmark the permalink. Leave a comment.

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