Wednesday, July 18, 2012

31 Pounds

We had Nolan's four month follow-up with the surgeon on Monday. This was a routine appointment to check on how he is doing four months post-fundoplication. The appointment is in Rochester, which is a long three hour drive from our house, but totally worth it for the expertise and brilliance of the surgeon.

I took the boys to the science museum in Rochester before the appointment, as six hours in the car for a 20 minute appointment is generally not a good idea with an almost-five year old and six year old. The kids loved the science museum, though it was a bit crowded with day camps and school tours.

We only had about 2 1/2 hours at the museum before we had to leave for our appointment. The hospital is only about 10 minutes from the museum, but finding parking and actually getting the boys to and from the car takes a bit longer. We made it to the appointment with five minutes to spare.

We waited for about 10 minutes and they called Nolan's name. They took his height, weight, and blood pressure. The nurse reported his height at 40 and 3/4", which was a tad disappointing. His height isn't really increasing - something we hoped would happen with the C-Pap for his apnea. His growth is obviously an area of concern for us, though he hasn't fallen off the charts so we're happy enough to watch and wait.

A medical school student came in to ask us about our concerns (we mentioned growth) and then asked if she could take his history. I chuckled and wondered if she had enough time for Nolan's history. I was only about halfway through when the surgeon walked in and also chuckled, saying, "Nolan is one of our interesting ones."

We chatted about his healing from the surgery and how he's been doing wonderfully in general. I mentioned our concern about his growth and how we were a bit worried since Nolan is one of the smallest on his soccer team (and is also the oldest). He's the average height of the three year olds and weighs less than any of them. The surgeon wanted to look at his height and weight status, and was not happy. Not happy at all. I hadn't seen his weight on the scale, but Nolan is down to 31 pounds. 31 pounds and nearly five years old - he was 34 pounds about 5 months ago.

31 pounds, 40.75" tall

He has fallen off the charts. I wanted to put my fist through the wall at this point - whatever we gain in one area, we seem to lose in another. His weight for height is even more abysmal.

For whatever reason, Nolan cannot take in enough calories to grow. No matter what, he needs more calories. The surgeon is going to collect some data to calculate the number of additional calories Nolan needs to grow - and then we're going to feed him at night through his G-Tube. Did I ever mention how glad I am that they placed that mic-key at the time of fundoplication? They don't always do that for kids in Nolan's age range, but I think it should be mandatory for any kiddo with a complicated history. If we didn't have that tube, he'd be going through a second surgery to have one placed. Fortunately, initiating nighttime feeds is extremely easy now because the hardware is already in place.

Part of the data collection includes a food diary, so that we can work on WHY the little guy isn't growing. The possibilities are:

  1. He isn't eating enough. He seems to be eating fairly well, but tiny bites all day long may not add up to enough calories. He also gets bloated and complains that he is full on a frequent basis, then is ravenously hungry 4-5 hours later. It is possible he still has delayed gastric emptying or another cause for feeling full too quickly.
  2. He is burning too many calories. With Nolan's laryngomalacia and apnea, breathing takes effort. Add in the summer months and swimming and soccer, and the lower muscle tone, and everything he does takes more work than a typical child. He might simply need more calories than he can possibly take in by mouth.
  3. He isn't absorbing what he eats. We know he has intermittent, severe diarrhea. In general, that area of his digestive tract doesn't appear to work perfectly well. He might not be absorbing food properly, even if he is eating enough and isn't burning too many calories.
Right now, I am writing down everything the child eats and drinks, and will email it to the surgeon. Nolan is also going in for weekly weight checks at his pediatrician's office, to monitor his growth. 

Over the next two weeks, the surgeon is going to look at what he is eating and his weights, and then he'll set up the nighttime feeds with the supplemental calories. We'll have to get a feeding pump and all the accessories that come along with that - and figure out what to do with a feeding clinic (we have to choose between Buffalo and Rochester - one is closer, one is better).

In the meantime, Nolan is having all the ice cream and milkshakes he wants!


Kyla said...

This is what I use to calculate K's dietary needs: It is handy and pretty thorough.

Sorry you guys are dealing with this, but I am glad he already has the button. It was such a hard decision for us to move forward with that part when K's weight started slipping...glad you can skip that! This old post of mine ( how much of a different tube feed supplementation did for K! I hope you guys will see the same success.

dlefler said...
This comment has been removed by the author.
dlefler said...

Thanks for that link, Kyla. I definitely will check it out - we're new to this part of it all (and I heartily agree - the tube is already there so the "hard part" was done four months ago - starting feeds shouldn't be too difficult since he already has the tube). I really hope we see a jump in his weight, at least. Height is another thing, but our surgeon did say that they often will lag in height growth because their bodies are sacrificing growth in height to maintain weight.

Herding Grasshoppers said...

So glad you already have the mic-key! I wish things were easier, but at least that One Thing is in place, *sigh*. And he's such a great kid :D


Magic Ear Kids said...

I hope you find the answers in the food diary. Persistence on the part of parents always helps! Stick with it and introduce him to butter!

TheSweetOne said...

Hey honey. Have Nolan's growth hormone levels been tested yet?

Rena said...

How frustrating! One step forward, two steps back. We're watching Queen Teen closely as well. She's eating better, but still losing weight. So fun.

Nolan is looking great though. So cute.