I am never so grateful for the invention of the DVD player as when I am driving two small boys for six hours (round-trip). I am even more grateful for the $5 bin at Walmart that supplies cheap kid's movies. The drive to Rochester went well, though Nolan's batteries died somewhere between Buffalo and Rochester.
Nolan: "Mom, I can't hear. My batteries died!"
Me: "OK, Nolan. I'll change them when we get to the doctor."
Nolan: "MOM, my BATTERIES DIED!"
Me (shouting): "I'll change them when we get there."
Nolan (at top volume): "MOMMMMM!!! MY BATTERIES ARE DEAD!"
Suffice it to say that I heard a repeat of "my batteries are dead" for the next thirty minutes. Note to self: change batteries before the next long car trip, even if its premature.
In any case, we made it there in plenty of time. The boys were really good in the waiting room, which is something of a minor miracle in my world. We were called back and Nolan was measured and weighed on the dietitian's scale. He weighs 33.7 pounds on her scale.
When she came in, she had no idea of his medical history. She simply knew that his surgeon was recommending overnight continuous feeds, and that he had had a fundoplication and g-tube placed in March. He is failure-to-thrive, and is only consuming half the number of calories he needs to grow. She had no idea about his hearing loss or other medical issues, which is par for the course (each specialty is myopic and only sends on information about their particular subject matter).
I didn't go through his entire medical history, as I had a feeling she would like to eventually go home for dinner, but I did discuss his reflux and bloating issues. I showed her pictures of the bloating. Pictures are always good at these "first meeting" appointments, as Nolan's issues have been a long-standing battle and not something that has cropped up recently. He hasn't gained weight in over a year (and has actually lost a little), which is generally not a good sign.
She said that she normally likes to have kids try DuoCal (a fat/sugar additive) and Pediasure orally before tube feeds. They normally give kids 3-6 months of an oral trial.
Nolan would need to take in three additional bottles of Pediasure plus 5 tablespoons of DuoCal plus his normal intake to grow.
She is giving Nolan 4 weeks of oral trial time - if he hasn't gained in four weeks, it goes into the tube. She gave us chocolate and strawberry Pediasure and told me to take it home and see how he likes it. If he likes the taste, she'll order it along with the DuoCal.
We're already running into problems. He HATES the Pediasure. HATES it. Apparently, it tastes a little like baby formula. I haven't tried it yet.
The other problem is there is no way I can get 3 whole bottles of Pediasure into that bloated little tummy without causing vomiting. He took a few sips tonight and most of it ended up on his shirt (spat out, not from vomiting - but he has no desire for more). I have to call the dietitian tomorrow and see where to go from here - perhaps we can simply use a ton of DuoCal instead of the Pediasure. I also have tips from other parents who have been-there-done-that to ask about Carnation Instant Breakfast, as that might be more palatable.
There is a very high probability that Nolan will be tube fed in about 4 weeks, to supplement the other half of his caloric needs. The dietitian said that he cannot be fed overnight while using C-Pap. This means that he would have to be fed during the day, which further complicates matters. If he is fed during the day, we run into the same bloating problem. Plus, the tube feeds are more likely to take the place of food. I'm currently scurrying about trying to find other parents who have been in the C-Pap/overnight feeds situation, to see what their solution was. I think the concern is that the formula could be refluxed up and then sprayed into his lungs by the air pressure of the C-Pap - we're not confident that his fundoplication is holding since he has been vomiting so easily.
I suppose this is another thing we'll take one step at a time. Blurgh.
4 comments:
I think you said it all with that last word: blurgh.
I wish you strength and answers, plus less vomiting and bloat.
When KayTar was 4, she was drinking 2 Pediasure a day and getting 2 per tube as bolus feeds. She stopped willingly drinking it around 5 and went all to tube feeds. If everyone agrees that he isn't going to be able to handle the PO challenge, why can't they just let you trial feeds now? Maybe 1-2 bolus feeds at least? We have never done overnight feeds. With her reflux, it has never seemed like a good idea for me. She does get one bolus feed early on in the night, but we are still awake for that. If we ever have to do go to overnights, we'll probably opt for a GJ, just so the chances of it entering her airway are slim.
Prayers for answers and thriving,
Julie G
Kyla, I think this is the dietitian feeling like her toes were getting stepped on by the surgeon (who is aware of Nolan's complexities) and wanted to try her (and I quote) "pixie dust" first. No way in heck it is going to work, as he simply doesn't eat that much. He bloats first! We'll see how it goes. I have a call in to tell them how much he hates the pediasure.
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