Road Trip!

As you may know from this blog, the other struggle we have with Nolan has to do with his feeding.  He drank very little from a bottle at birth, and by the end of his 2 month recovery from the Norwood, he came home with a feeding tube.  Two years later here we are, and Nolan still isn’t eating.  Sigh.  While it’s easy to hold off tube feeds and encourage him to eat, the other side of the story pops up too: weight gain.  The truth is, he needs to be about 30 pound for his Fontan procedure, but if he can’t gain weight, it puts everyone in a challenging position.  So we’ve been stepping up his tube feeds in an effort to help this little man grow.  Still, though, we want to kiss that G-Tube goodbye.

While Nolan does attend feeding therapy once a week, it seems as though he hasn’t really made a ton of progress with eating (and that’s not their fault).  I mean he can eat some things…IF he feels like it.  But we needed to know more, and his feeding therapist wanted to know more too.  In 2014 we send him for a swallow study in the hopes we’d find out something.  It was NOT a good experience: they were not helpful and basically forced him to drink the solution and said he doesn’t aspirate.  Well duh.  I could’ve saved us all the stress.

Enter a specialized clinic called Carolina Pediatric Dysphagia:


They seemed to specialize in what Nolan was struggling with…so we got a referral, then an appointment for an assessment and modified barium swallow study.  Exciting!  So the catch?  They’re in Raleigh, NC…which is nearly a 3 hour drive for us….EACH…WAY.  But…we’ll do what needs to be done, right?  So I took the day off work, we got people to watch the other kiddos, and my wife and I hit the road with Nolan.

We got to the clinic and they had a train set and play kitchen to entertain Nolan while we waited.  We finally got to have Nolan’s feeding assessment, where the we met the very nice feeding therapist.  She went over Nolan’s previous assessments and talked with us about his eating.  Then we sat him down and she watched him eat…or try to eat.  She immediately came up with a few thoughts about his swallow strength (or lack thereof) and the rhythm of his chewing, among other things.  She took lots of notes and suggested a few things like getting him weaned off his pacifier (God help us), stop the sippy cup and move to a straw cup, and use a more rigid spoon.  Those changes didn’t seem to painful…well except maybe the pacifier, but we’ll get to that.  Once the assessment was complete it was time for the swallow study.  The therapist actually went to that too, which really surprised me…I mean I didn’t expect that: they did, after all, send us a set of directions to the radiology location.  But she offered to lead the way and let us follow, which was really awesome, because I’m totally not familiar with Raleigh.

So we got to the swallow study and they were expecting us and were very nice.  Unfortunately when we took Nolan back, it looked enough like a Dr’s office and he freaked out.  Sigh.  My poor son (that’s another blog entry for another day).  Anyhow we went back to the room where the test would be done: they took some yogurt, cheeze-its, and water from us so they could add the barium to it.  As they worked on that, I put on some good ol’ Yo Gabba Gabba music on my phone to calm Nolan down and then Bekah and I put on our lead gowns.  Mine was pink and I totally rocked it.  Once the test was ready to begin we had to basically lift Nolan into a little chair that was placed in the middle of this machine.  The only thing I could think of was “Oh no, he’s gonna FREAK.”  But lo and behold, Nolan sat there like a champ…I’m sure he was amused by all the attention in the room, there must’ve been like 5 people in there at least.

But, of course, he couldn’t just sit there…he actually had to eat.  And this is the hardest part…usually when we try to feed Nolan he turns his head with a loud “NOOOOOO!” and refuses.  I was worried it would happen here and we’d waste the whole trip.  At first he wasn’t having it, but I made funny faces and tried to play a game with him…and he opened up and ate a bite of the barium yogurt…and then another.  And while this was happening, they were running the x-ray to see, in real time, how he swallows (I couldn’t see this part because it was on the screen behind me and I was totally focused on feeding Nolan).  Then we had to get him to drink some water, which he did.  Then came the oh-so-delicious barium cheese-it.  As I was holding it up to him I was thinking “There is NO way he eats this thing.”  But you know what?  They told us to hold feeds before he got there…and I guess lil’ man was hungry…and he ate it!  I was SO proud of my little man!

So the gist of what I got was that Nolan’s swallow isn’t completely strong enough to get things back…his food and drink kinda hang out in a sorta green room, if you will, before he has to swallow again to get it back down.  But the therapist said she would review the video and get us a report.

We got the report the following week and it was chock full o’ jargon I didn’t understand.  But what I did understand was the section that said “Prognosis: Good, with consistent feeding therapy.”  Say what?  Heck yeah!  I think this is the first time someone was really like “Yeah, he can eat” as opposed to the “We’ll try.”  The good news is we shared this info with Nolan’s current feeding therapist and it seems like she found some really good stuff in the report, so I’m really hopeful we can get him on the right path and really turn things around!  You can do it, Nolan!!!

Since the visit, we worked to wean him off his pacifier, which went WAY better than I thought.  A minimum of meltdowns, it was pretty awesome.  We’ve got him on a straw cup and he’s doing well with that.  So now we’re on our way to developing a plan to get this little boy to eat!

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on September 23, 2015, in feeding and tagged , , , , , , . Bookmark the permalink. 2 Comments.

  1. It sounds totally random, but eating “dum dum” lollipops really helped my son, JJ (HLHS post-Fontan) with his oral motor issues. He also has a g-tube and was never able to drink from a bottle. We’ve tried so many things to help him gain weight, but since he’s very active, it’s always a struggle. He had his Fontan in 2013 at under 30 lbs and recovered wonderfully. I was happily surprised. He still hangs around 30-33 lbs, but is a bit taller. Good luck with Nolan’s therapy!

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