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Here to stay for now

Pureed oatmeal, anyone?
After much contemplation and my husband reminding me that he was leaving town for the weekend on Thursday, we decided to keep the GJ tube for a little bit longer. (remember how last time he went out of town, she got admitted to the hospital the next day & stayed for 2 weeks?) We're going to keep the GJ until we get back from our road trip at the end of July. Kind of like how last summer, we decided to keep her NG tube for 2 extra months rather than have her G tube surgery a week before we left for a 2-days-of-driving-in-each-direction road trip. We're pretty good at troubleshooting what we've already got so we'll just stick to it for now. We'll rock that boat when we get back into town so that if there's a problem, we can have it taken care of at our own hospital with our own doctors. Just to be on the safe side, I've already located the hospital where we're going that could replace her GJ if it had a problem or came out, and a compounding pharmacy so I can get the refill of her medication that has to be refilled every 2 weeks. The next step is adding up how many cans of formula we'll need for the amount of time we'll be gone and trying to pack enough stuff in case of emergency without going overboard. :)
In other news, the food saga continues. One of Raya's new favorite words is "eat" and "bee-bowt" (seatbelt), both of which she says repeatedly whenever she sees her high chair. Even at 3:45 yesterday morning. She had woken us up screaming hysterically because her bed was saturated with 4 hours' worth of formula and bile thanks to the med port popping open on her extension tube. I had it taped shut nice & tightly but the extension got kinked and instead of setting off the pump alarm, the pressure popped the medicine port open, tape & all. After that, she was disoriented & obviously confused about what time it was, and would NOT go back to bed. It didn't matter what I did, she just kept crying & screaming.
Finally, since I didn't want anybody else joining us (well, besides Kaida who was already laying on the couch) I took her outside. As usual, she immediately stopped crying & laid her head on my shoulder. The unfortunate part was that even at 3:30 in the morning, it was still 86 degrees outside and was really muggy, so holding a sweaty toddler and sandwiching her fleece blanket between us was not a viable option. I thought she'd be ok when we went back in since she was calm but no, it started up again as soon as I reached for the door handle. Her high chair was sitting right next to the door so as soon as she saw it, she started reaching for it and saying, "eat! eat! bee-bowt!" (still crying, of course) so I finally gave up and put her in the chair and gave her a couple of Ritz crackers to gnaw on. Every 20 minutes or so, she'd start making her little noise to tell me she wanted more. I didn't dare go back to sleep because I didn't want her to choke on the crackers, so instead I sat on the couch from 4am-6am watching Hoarders on Netflix while she mutilated/smashed/played with/ate crackers.
At 6:00, I decided she'd had enough and hosed her off and put her back to bed. I flushed her G tube to make sure there wasn't any cracker gunk in it too. Then at 8:00 when she got up again, I drained her stomach & 45ml of yellow liquified cracker remnants came out. Delayed gastric emptying, anyone?
She's kind of gotten the hang of eating Ritz crackers (and by that I mean biting off little chunks until the entire cracker is in her mouth and then keeping her mouth closed until the saliva slowly carries it down her throat a little at a time until it's gone or mostly gone, and then repeating). The process takes her about 10-15 minutes per cracker though. At that rate, it would take her about 14 hours to consume her required 900 calories per day. Not that Ritz crackers are nutritionally complete. I guess my point is, just because she is now willing to stuff crackers in her mouth & swallow what she can, it will still take a lot of work & progress before she can eat enough to ditch the tube.
I think this whole process of teaching an exclusively tube-fed child to eat is more like climbing a whole mountain range (in dense fog) than just climbing a mountain. We just climbed Mt. Willingness-to-put-food-in-mouth and now we're on to Mt. Learning-what-to-do-with-it-next. Or at least that's what we think we're climbing next. :) That's where the fog part comes in. We think we can see where we're supposed to go next but sometimes the fog gets so thick that we can't see clearly and we wander around for a while before we make a breakthrough into a clear spot and can get back on track. (Did I mention that tangents and lame analogies are my forte'?)

Comments

  1. Hello Raya and mom-- I haven't spent a long time on your blog, but did run across it when searching for cute alternative to the standard backpacks for enteral pumps. Anyway - I read a tiny bit of your story and can seriously sympathize: I have a former micro preemie that has always been feeding tube dependent. One big difference with us is that we have always blended her food for her tube (NG, G, GJ) and her health has been excellent for it. We belong to a Yahoo group for Blenderized Diet and also a the Blenderizeddiet.net forum where you can poke around the threads on the topic of blending for a feeding tube. Have you considered this? The Yahoo group has over 1000 families who have done this for their loved one and there is raving success weaning from tubes and also curing reflux by NOT feeding synthetic food, ie formula. Real food moves through the GI tract SO much quicker and with much less commotion, it tastes better when it's burped up and the body actually craves real food, not fake. I cannot tell you how many families have seen significant improvements in motility and reflux by even just adding a few jars of baby food to their formulas. Anyway - if you are interested, please feel free to email me at carissanauman@me.com. If not, that's okay, if you already know about this, sorry to bother you. Professionals do not ever recommend this and manufacturers say you can't put it through a tube or use a pump. Lies! I've done it for 10 years and going strong, as well as all the other families I mentioned on the lists! Best regards in any case...

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