Skip to main content

A new calorie record

So this is very exciting but it comes with a disclaimer: Raya is not "cured" and this probably won't be a consistent thing. (Not trying to be cynical, just going off of previous experience.)

Raya has broken her all-time record for oral calorie intake twice this week, probably because of the help of Periactin. On Friday, she ate a whopping 440 calories, which blew her previous record of 310 out of the water. The 310 calorie day was in January 2012, and she had 3 days in a row of 300 calories, also with the help of Periactin. Then she caught a cold that turned into a sinus infection and she didn't eat a single crumb of anything for a whole month, and had not ever hit 300 calories in a day again since then. Up until this week, her max has been about 260 with her average being about 160 (which is her daily oral calorie goal) so obviously, 440 is a big deal. And what did her 440 calories consist of? Here's the breakdown:

1/2 of a HUGE peach at feeding therapy=31 calories
3/4 of a medium red potato at feeding therapy=82 calories
1/2 of a HUGE pear=87 calories
1 1/2 servings of Wavy Lays potato chips=240 calories

Am I thrilled about the fact that more than half of those calories came from potato chips? No. But sometimes you can't be too picky when all you're doing is trying to convince your non-eating child to eat. I did cut her of at 1 1/2 servings and she didn't eat all of those chips at once.

I was pretty darn excited when I counted up the calories. Well, actually, I had to count and recount them 3 or 4 times to make sure I wasn't screwing something up because I had a hard time believing that she had actually eaten that many calories. I knew it was a lot of food (relatively speaking) but the healthy, single ingredient foods she eats never add up to very many calories so it seemed high. Once I realized my total was right, THEN I got excited. To be fair, I know that part of the reason she ate so many calories by mouth that day was because I did not give her formula at all until about 3:00 in the afternoon. Normally she's had 500 calories' worth of formula by then and fits food in during the breaks between feeds. I would imagine that the combination of an appetite stimulant plus not getting any formula probably helped with the food intake. The sad part was that once again, we were able to see that she seems to feel a lot better when we don't feed her than she does when we do feed her. I hope that we will get to a point where she has enough foods in her diet that we can do a partially blenderized diet for her, and maybe her body would tolerate that better than the formula she depends on now (which I have no problem with and am grateful that we have it).

Saturday turned out to be a really good eating day too. For breakfast, she ate another 160 calories' worth of potato chips. Throughout the day, she also ate 1/2 of another huge pear, some French fries (baked at home, not from a restaurant), and she drank 1/2 of a box of Splash. Grand total for Saturday: 477 calories. I'm still a little in disbelief. Again, I'm not thrilled that the bulk of her calories came from potato chips and French fries but the point is that she ate a good amount of food each time we offered her food. I also started feeding her with the pump at about noon so she didn't go as long without formula yesterday.

I wish I could say the story ends there but it doesn't. (I feel like I'm always sandwiching good news with bad...) Everything was great until about 11:00 last night when she came noisily down the hallway with her 2 blankets, a couple of stuffed animals, and dragging her pump backpack, and plopped down on the couch next to me. I thought she felt a little warm but figured it was because of the fleece pajama pants she was wearing. It didn't take long to realize that she didn't feel good though, and she had a fever of 101. I asked her if she didn't feel good and she shook her head yes. I asked her what part of her didn't feel good and she didn't answer, so I asked her if her tummy hurt and she shook her head yes. When I know her stomach hurts late at night like that, I'll offer to drain it for her and she sometimes tells me yes but usually she says no. This time she shook her head yes and said yes, so I had Donny get a bag to drain her with. I wasn't sure we'd get other than formula but it didn't look like there was any food so that was good. There was a LOT of air. I really don't know how she had so much air in her stomach but getting that out HAD to have felt good. I also got out pretty much the exact amount of formula that she had been fed by the pump for a little over an hour that it had been running. That was better than what I expected to see but still not great when you consider that some of that formula should have emptied out of her stomach by the time an hour had passed. We didn't feed her anything else for the rest of the night to give her stomach a break.

This morning she had no fever and felt completely fine. I have no idea what was going on with her last night as far as the fever goes but I think her feed rate on the pump was too high. I had increased her from 125ml/hour to 135 sometime last week and it seemed fine but over the past couple of days I had started to think maybe she wasn't tolerating it as well as I thought. Today we've turned her back down to 125 and she seems much more comfortable there. It's hard to imagine that food could be responsible for the fever she had but maybe it was. I know she also got into some shredded cheese on Friday too, and her reactions to dairy are always delayed. Ugh, I don't know if we'll ever figure this kid out!

Today and tomorrow are her days off from Periactin but we'll start again on Tuesday and see how she does. Hopefully we can keep the 400+ calorie days coming and hopefully we can use the increased appetite to help convince her to eat some new foods!

Comments

  1. Hi! I have been reading your blog for quite some time and I wanted to tell you you have beautiful kids, Raya is a sweetheart and this blog is very educational. Before reading here, I had no clue about people who need tubes and feeding pumps. I am glad to hear Raya seems to be taking steps in the right direction. Thank you for having this blog and thank you for being honest and sharing both good and bad!

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …