Skip to main content

Lab results & feeding changes

We made another trip to the "red and purple doctor office" today, AKA the GI clinic. Any time my 4 year old would come with us to the doctor, she HAD to know which doctor's office we were going to, so we identify which is which by things like the colors of the outside of the building, the one with the red table that has movies on, the one with the germ room, etc. :) Anyway, today we were at the red and purple office so Raya could have a visit with her GI doctor. We hadn't seen her in 2 months and I was crossing my fingers that she'd had some weight gain this time since she only gained a couple ounces between her last GI visit and her weight check a month later.

The whole visit just started off on the wrong foot. Last time Raya did great and was friendly & happy to see everyone and did everything the doctor wanted her to, so I thought we'd be fine today. Raya got really mad at me when I started trying to take her clothes off. Usually she can't wait to strip down to her diaper & run out in the hallway to the scale, but this time she kept yelling, "No wannih shuh off!" (translation: I don't want my shirt off!) She kicked & screamed the whole time we were trying to measure her height (34" give or take a little, kind of hard to be accurate with all the kicking & screaming). She enjoyed having her head measured and getting her blood pressure taken though. Her temperature was 99 for some reason.

Thankfully today, her weight was up to 12.1kg, or in American, 26 lbs 10.81 oz. :) That means she gained almost exactly 1 pound since her weight check a month ago. Good enough for her doctor and good enough for me. I was just glad she didn't lose any or stay the same this time. :)

So once the doctor came in, the crap really hit the fan (no GI pun intended :). She needed to examine Raya, but Raya was playing with a giant toy that was in the way, so the doctor took it and set it aside so she could do what she needed to. That's all it took for all h-e-double hockey sticks to break loose. Raya screamed and cried the rest of the time we were there. She and Kaida were fighting over the aforementioned problem toy and running around making all kinds of noise, the doctor seemed tired and stressed (I swear she's lost weight too and I think it's because she misses her nurse so much :), and the whole thing was just ridiculous. We were sitting 2 feet away from each other and could hardly hear each other. (did I mention I'd had to wake Raya up from her nap to go to the doctor? no more 1pm appointments for us!)

So here's the good and bad of it. Bad first. Raya's allergy labs came back normal. Just as I had pessimistically predicted. Really, I knew they probably wouldn't come back positive because she's had absolutely no rice in her diet and her exposure to milk has been very limited, so everything came back a zero. Very frustrating. I was actually a little angry when she read me the results because I have SEEN the reactions her body has when she ingests rice & dairy. (you should see the eczema on her legs right now)

Oh, and BTW, the little pill learned how to open the refrigerator door. Yesterday, I had my back turned and Donny walked in just in time to see Raya standing with the fridge open and drinking out of the milk jug. Nice, huh?

Anyway, I told the doctor about the times that Raya has woken me up at 4-ish in the morning crying and squirming around in her bed like something's wrong with her and then gone back to sleep and the eczema getting worse and she said she didn't know about the crying in her sleep but the eczema is definitely typical of an allergic response. The only thing we can really do is continue to avoid the things we know she has adverse reactions to even though the stupid allergy tests keep coming back negative.

Now here's the good. If she tolerates it well, then it will be REALLY good. We are officially tapering off the night feed. We will be shifting the formula she gets overnight to her daytime feeds so she'll still get 4 feeds during the day but they'll be higher in volume. That's the tricky part. Giving her feeds higher in volume puts her at risk of 2 things: vomiting and/or spitting up due to not being able to handle that much in her stomach at a time, and having even less desire to eat because she's more full from the larger feeds.

Enter Periactin, generically known as cyproheptidine. It's an antihistimine that is also known to stimulate appetite and may or may not help with slow motility. Since Raya doesn't seem to give a hoot about food and there's no rhyme or reason to when, what or how much she eats, we've decided to give her a trial run on periactin to try and increase her appetite (or give her one, period). She may get drowsy (which wouldn't be an entirely terrible thing :) and she might get really hungry but still not associate eating food with alleviating hunger, so she might just get really crabby instead. The only catch now is that the doctor says we have to wait until her 2nd birthday to start the periactin because the American Academy of Pediatrics is adamant about children not being on antihistimines until the age of 2. I'm not in a rush and really don't mind waiting another 2 weeks.

BUT the really really good news that I briefly mentioned & then changed subjects is that we will be getting rid of the night feed. That is HUGE. That means that there is a chance that in the near future, Donny and I will both get to sleep all night long without being woken up by "NEE-ner NEE-ner NEE-ner..." In case you need an interpretation of what the sounds like in real life, listen to the first 5 seconds of this video:
My only complaint about the sound in that video is that the actual alarm is MUCH louder and more obnoxious. :) So yes, we are both VERY excited about the prospect of not having to wake up to turn the alarm off, and probably even more excited about not having to make sure one of us is awake to set up her night feed.

I'm trying not to get too excited yet because in order to get rid of the night feed, she has to increase her current volume from 180ml per feed (6 oz) to 225ml per feed (7.5 oz). That doesn't sound like a big increase but her body has never dealt with change well and that's a bigger change than it sounds like. So far, I have increased her feeds to 200ml and she spit up after the first one, so it may take some adjustment time.

The other major change her GI doctor wants us to make is to start putting some real food through her tube. I feel like we are very lucky because I've heard so many stories of doctors being completely opposed to that sort of thing. She wants us to work up to the point where Raya is getting 350 calories from real food (180 of it to be eaten orally), and the other 600 from formula so that she's getting the complete nutrition that it provides. (mainly calcium and protein since milk/yogurt/cheese products are still not an option) I'm pretty excited about this because it will allow Raya's body to start adjusting to real foods even though at the moment she's unwilling and not completely able to eat them. And because I can start to use some of the ridiculously huge supply of syringes that we have stockpiled for months. :) It's going to be a LOT more work than what we're doing now (popping open cans & pouring them in the feeding pump) but it will be worth it.

So those were the good parts. They are very good and very exciting, but it was hard to feel excited when I was literally wrestling with my very strong almost 2 year old who wanted nothing more than to get away from her doctor. All the doctor wanted to do was feel Raya's belly to make sure everything was normal, but Raya was not having it. It was the worst fit she's ever thrown at that doctor's office (which is always embarrassing) and the only time(s) I can think of when she's gotten that worked up about ANYTHING are the times when she had to get IVs and it took multiple sticks and multiple people and much more time than it should have. I know the doctor likes us, but I think she was just as relieved as we were when our appointment was over this time.

We're still waiting to hear if there was anything abnormal in the results of the labs we had done for neuro, but I'm not really worried about those anyway since she's had them all done before and doesn't really fit the profile of having any of them be abnormal.

And last but not least, this evening we took Raya outside into the beautiful weather and I did her 2 year pictures. I'm saving them for her birthday post, but I'm excited with how they're turning out so I thought I'd post one. :) She is a busy, busy girl but we had a good time and it was a fun way to end a rough day. :)


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 …