A Lot of Miles and a Lot of Trust

As you know by this point, on top of having a CHD, Nolan has also struggled with feeding issues his whole life.  Aside from slowly taking a couple bottles from me when he was a couple days old in the NICU, he’s never really eaten by mouth.  He had a feeding tube placed before we brought him home for the first time and it’s been a life of tube feeds and feeding therapy for the little man.  Progress on eating has really been up and down: we successfully moved him from Pediasure to using blended feeds and eventually managed to get Real Food Blends covered by our insurance, which took quite a bit of work.  All the while he wasn’t really eating at all.  His morning routine, in fact, involved some meds, some fluids, vitamins, and some Benecalorie, which is a high-calorie product that we mix with water or juice:

morningfeeds

During Nolan’s stint on the rehab unit this summer, one of his speech therapists – Grace – gave us a few “local” recommendations for feeding programs.  All of them were hours away, which made for a tough choice.  In the end, we decided to try the feeding program at the University of North Carolina Medical Center because they had some experience working with heart kids.  Once all the referrals were made we had our first appointment for early in the morning in October.  Until this point, all of Nolan’s appointments are around 30 minutes away.  Now we were facing this:

unc-map

And not only did we face a nearly 3-hour drive, I had to take the day off work and we had to find people to drop off our other kids at school and pick them up.  This was quite an undertaking.  We left super early and made the drive…and barely made it there because of traffic.  UNC Medical Center is on a really big campus, right next to the University.  They have a massive parking deck with a $10 daily maximum and no validation in the hospital…BOO.  It’s kinda weird having to go to a different facility after being so used to Levine Children’s Hospital and we didn’t know what to expect.  We found the check-in relatively easily and went through all the initial paperwork and whatnot.  Then we were sent to a different waiting room and were barely there before Nolan was called back.  They got the usual weight/height/sats that everyone measures and then we were taken back to a room.

What’s unique about this program is that it’s run by a team approach.  We had a NP from GI come in along with a nutritionist and the feeding specialist.  All at the same time.  Yes, you read that correctly.  Working across disciplines: what a concept!  The initial appointment was really, really long: they had a ton of questions, naturally, and wanted a good feel for Nolan’s needs.  While they did give us some dry spoon exercises to do with Nolan at home, their first major concern was Nolan’s vomiting.  Nolan has always had issues with throwing up ever since he came home from the Norwood.  We talked to everyone we could about it and either no one seemed too concerned or no one could do anything about it.  And absolutely no one would communicate across disciplines about it.  God forbid.  So this was different.  They said the dose of meds he was on for his tummy was so low it wasn’t going to do anything so they prescribed him a different med – Nexium – that he would take once a day before feeding.  Then they also recommended starting him on a different food blend called Nourish:

nourish.png

It’s a plant-based formula that they felt better met his nutrient needs (Real Food Blends apparently was short on some things, hence our need to add vitamins).  Plus they said the addition of turmeric in the blend has shown to help kids with their reflux issues.  I was skeptical: I just wanted to jump to the feeding and get it done as quickly as possible so we can stop driving so much.  But hey, I don’t get to make that choice, right?  For now, though, hey held off on the Nourish and just had us work with the dry spoon and new meds on Nolan and meanwhile they would communicate with Nolan’s current speech therapist to see if she was on-board with UNC’s recommended plan (she was, thank God).

We went back one month later and Nolan was showing a little bit of improvement with the vomiting and he did a good job taking the dry spoon.  So the next step was to start him on Nourish.  They made sure our DME provider carried it (great job on their part!) and told us they’d email the recommendations for switching over.  What they didn’t tell us was…dun dun dun…we’d be bringing back to bleeping feeding pump.  And when I say bleeping I mean literally bleeping.

pump

This really made me pissed off because we had gone away from the previous Kangaroo pump and were giving his feed bolus by hand.  Now we were back to this nonsense and we they wanted us to put him on continuous overnight feeds for 10 hours.  TEN HOURS! Did they know how much this kid rolls around in his sleep?

We did try, though: we hooked him up and immediately this godforsaken machine would beep and beep and beep with some kind of error: No Flow In, No Flow Out, blah blah blah.  And I hated it.  Do you remember the movie Demolition Man?  Where Sylvester Stallone kept cursing at that citation machine?

swearingmachine
That was pretty much me.

So we fired off an email to the team and pleaded our case for not having the overnight feeds, at least.  They responded that it was meant to help create a hunger sensation that would help with feeding and to trust them for awhile.

So there it was…trust.  It’s hard to do, and especially hard when the team is hours away and doing something that inconveniences you.  But that’s just what it is, an inconvenience for me…ultimately it’s meant to help Nolan, so we sucked it up and went with it.

Well I gotta tell you: between the meds and the feed blend, Nolan rarely vomits now.  And even when it seems like he’s going to (usually when he’s upset), I’ve noticed he’s able to control himself and not do it.  It’s amazing!  We’ve also graduated from dry spoon practice to dipping the spoon in juice and Nolan has been doing a great job.  Yesterday he sat down to feed at least 3 times and took at least 20 bites each time.  Soon we’ll graduate to dipping the spoon in a little bit of puree.  Baby steps.  This is going to be a long process but I’m seeing some progress in our little man…and I’m starting to trust his feeding team more and more.  It’s amazing what can happen when disciplines work together!  So until now we’ll keep up the work and won’t head back to UNC until February, but it’s promising! As long as he keeps eating, we’ll keep driving.  Whatever it takes.  Go, Nolan, Go!

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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 January 5, 2017, in feeding, Uncategorized and tagged , , , , , . Bookmark the permalink. 2 Comments.

  1. Wow what a journey you are on, thank you for sharing…
    I have 10 month old tube fed little girl and I definitely share your feelings about the pump!

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