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New adventures in bolus feeding

It's been almost a month since we went to California for motility testing. I gave myself week or so to process everything and enjoy Christmas before getting down to the business of making changes. And to wait out the rash she got from eating cross-contaminated French fries at the hospital:

Change. It can be such a yucky word. Yes, change can be a good thing, but ugh. Nevertheless, change is what the doctor ordered so change is what we're doing. Very slowly and carefully. We've seen time and time again over the years that this girl's body does not like change and tends to react unpredictably to it, so we're careful. However, since she was healthy and seemed to be back on an upswing with interest in eating by mouth, we decided it was time to go for it.

When the motility doctor came in to talk to me about the results of the testing and her only suggestion was to try and get Raya back on bolus feeds, it took everything in me to hold back my tears until she left the room. I had been trying for probably a year to get off of slow continuous feeds to no avail. I imagine how I felt is similar to how it might feel to be floating along in the ocean, clinging to a piece of driftwood and then have a boat come by, but rather than pluck you out of the water and rescue you, they tell you, "You know, you really ought to keep swimming towards that shoreline. We're not sure how far away it is but just keep swimming and you'll probably get there."

Now don't get me wrong, she was wonderful and she didn't leave me hanging, there just isn't any medical intervention she or any other doctor can take to give us a boost in helping Raya. She did give me a plan for making progress towards bolus feeds though, so that's what we're following. Without rehashing all the details of Raya's visceral hyperalgesia diagnosis, our goal is to teach her stomach to stretch without causing pain or making her nauseated to the point of vomiting. I know it makes me sound like a total cynic but from where we're sitting, which is 15-17 hours a day on continuous feeds with no significant change in almost a year, that feels like a lofty goal. Like when a 5 year old says he wants to grow up to be a famous rockstar. It's not that it won't ever happen, but when you hear it, you just smile and nod and pat the kid on the head. That's how I feel about getting her back on bolus feeds. I know we will get there, but it's hard to see the end from the beginning.

The plan is to start with one bolus feed a day during her "best stomach time" and to start with giving her 2 hours' worth of formula in 30-40 minutes. That sounded do-able to me. We started the Saturday after Christmas and this is what it looked like:
I gave her the morning doses of her meds and then waited the standard amount of time that we wait to allow them to kick in. Then we got out her Candy Land game, 180ml of formula (6 oz), water to flush with, a towel, and a puke bucket (just in case). I calculated it all out so I knew exactly how much formula we needed to do in 5 minute and 10 minute increments and we started. It went great for the first 3 ounces. She was happy, chattering, playing the game, and just her usual self. The second I started to push past 3 ounces, there was a visible change in how she felt. (see photo above) When we hit 4 ounces, she threw up. { #bolusfeedfail } It was sad. We took a little break and then finished the last 2 ounces a bit slower than we'd been going before. She felt yucky for a while and then was okay and we started her pump and ran the rest of her formula at her normal continuous rate.

The rest of Christmas break, we worked on finding a rhythm with the bolus feeds and I worked on getting the formula in at a comfortable rate. Easier said than done. By the time the kids were ready to go back to school, she was doing much better with tolerating them as long as I didn't go any faster than 40 minutes. At 35, she refluxes (sometimes into her mouth & then coughs & sputters on it) and at 30, she pukes. She likes to help push the formula, which is hard to let her do because she doesn't understand how to do it slowly.
We're still trying to decide what method works best for her. We definitely can't do gravity bolus (pouring formula into an open syringe and letting it flow in by gravity). She doesn't do well with that and it's too hard to do it slowly enough. We do pretty well pushing it by syringe but the drawback with that is that syringes with rubber plungers suck. They don't last very long at all. I may have to bite the bullet and purchase some silicone O ring syringes out of pocket because they work MUCH better and last a lot longer, and none of the DME companies provide them. We've had better luck with one brand of rubber plunger syringes but of course it's the brand that we don't have very many of. It also gets tricky trying to get a formula bolus in by syringe before school in the morning. The 3rd option is to use the pump. That works pretty well but has its drawbacks too. First, it means we have to reprogram the pump multiple times a day, which leaves us with the risk that it could get programmed incorrectly and either feed her too much too fast, or not enough. Second, she needs breaks every so often during the bolus feed and when we do it with the pump, that means we end up extending it out longer than the 40 minutes and that doesn't do her any favors with what our goal for bolus feeds is. Still working on that part.

I've been having Raya eat something by mouth while she's getting her bolus feed. The act of chewing & swallowing food triggers certain physiological events that prepare the body to start the digestion process. Think about how your mouth starts watering when you smell food. Smells and the first tastes of food trigger the release of hormones & chemicals that signal digestive tract to start moving & get ready for food. Having her eat, even just a few nibbles of something, helps her to tolerate the bolus feed a little bit better. (or at least that's the theory)
I usually can't get her to eat more than a few nibbles of whatever food she chooses. Most of the time it's banana. She also likes to color or play with toys while she gets fed.

We HAVE made progress in the past 2 weeks though, and she will now touch the banana with her fingers instead of needing to use a fork.

That brings me to the down side of our new bolus feeding adventure. Since starting the bolus feeds, we have seen some dramatic changes in sensory processing and subsequently in behavior. The number of times that I've said "Raya, calm down please" in the last month is in the hundreds. She is back to needing to squeeze and hug things but doesn't want to be touched, just like when she was a baby. She is bouncing off the walls from the moment she wakes up until the sleep medicine kicks in at night. Her attention span is notably shorter and she argues about EVERYTHING. She has been really emotional. Like, mood swingy, PMS-y emotional. She has no middle ground. She's either really high or really low but nothing in between, both emotionally and physically. But she's not vomiting. {as if that's the only important thing to consider...}

The good news is that she is getting a little more sleep now that her continuous feed is ending earlier. We have known for a very long time that overnight feeding impacts the quality of her sleep, but there's really nothing we can do about it when she's not tolerating a feed rate that allows her to not be fed while she's sleeping. When we do a bolus feed of 2 hours' worth of formula in 40 minutes, it buys her an extra 1 hour and 20 minutes off the pump, which means I'm usually only up once in the middle of the night and usually only for half an hour instead of only getting to sleep in 2 hour increments. She has had more nights where she either sleeps through the night or only wakes up for a few minutes and then goes back to sleep rather than waking up and being awake for 2 or 3 hours in the middle of the night.

The jury is still out on whether this change is a good one. So far, the change in her sensory issues doesn't seem to be having too much of an impact on her at school other than being really clingy to her teacher and hugging the other kids whenever she gets the urge to hug someone. It's really a good thing she's only at school during her best time of the day and only 3 days a week. If she was in kindergarten right now, it would most definitely be having an impact on her at school. It has definitely impacted other areas of her (our) life though. Everybody is feeling the strain and bless their hearts, they are all trying really hard to be patient with her. Making decisions about whether or not a change in her feeding schedule worked for her was a lot easier when vomit was her main indicator of a problem. I'm not totally convinced that this plan is in her best interest, but we will keep going for a while and see where it takes us. I'm still waiting on the final report from the motility specialist and we have a GI appointment coming up at the end of the month, so I'm sure there will be plenty to talk about.


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