Wow, I didn't intend to go so long without blogging, but I had no idea how busy life with a new g-tube would be. :)
Ruthie was discharged on Friday, March 2 and we have been going-going-going ever since! She has appointments of some kind almost every day, either for therapy or some kind of doctor, and now we can add surgery follow-ups to that. I need to post a picture of the dry-erase calendar glued to our fridge....we're in big trouble if something ever gets spilled on that thing and our appts are lost.
So far Ruthie is doing well with the g-tube. It didn't take long to figure out a good routine, pump mechanics, etc. She is now eating every 2 hours from 8a-4p, and her continuous feed runs from 6:30p-6:30a. We've been slowly, slowly upping her bolus feeds - she came home at 60mls and we are now up to 67. So far we haven't had any incidents of volume intolerance. We're also trying to move up her rate (amount of time it takes to get that 67 into her), but it's an even more frustrating slower game....she came home eating over the course of an hour. With that rate, she'd start a feed at 8am and not be done until 9, then I have to flush her tube, wash/rinse the feed bag out, prepare the next feed, and at that point there's scarcely 15 minutes before the next feed begins. Ridiculous but necessary. We've slowly gotten her down to about 50 minutes per feed - the goal is 30 or less. Her little tummy just can't handle fast or large volumes. Hopefully one day it will. I'd like to see her taking 90mls every 3 hours like she was before all of this feeding drama started, and continue with her continuous feeds as is. Half of her daily caloric intake is coming through her continuous feed at night. We've been able to up her from 30mls/hr to 31, giving her 375mls over a course of 12 hours, but when we tried to go to 32, she was "urping" a lot in her sleep, so we're leaving that one alone for now.
She's been doing some better with baby food the last two days. She still gags once or ten times twice but I've figured out that once a bite goes into her mouth, distracting her with her beloved Ella Funt (see photo at bottom) goes a long way toward her not gagging.....it almost seems purely psychological sometimes. (Maybe it's all psychological...I don't know. I didn't pay too much attention in that college class, but I digress.) So far she's had applesauce (eh), bananas (eh), sweet potatoes (not too bad), and carrots (eh). Jay and I were agreeing today that she doesn't seem too interested in *anything* you put in her mouth (food-wise) - no one food seems to taste better to her than another. She has yet to experience the oh-my-gosh-that's-the-best-thing-i-ever-tasted moment. Whether or not that's part of her aversion, I'm not sure, but I'm just happy she's not having a meltdown every time I get near her with a spoon or a bottle like she used to.
Bottles....that's a whole other story. We're supposed to be attempting PO (by mouth) feeds every time she's awake during a feeding time. The last two times I've offered her a bottle, she took two sucks and started choking, then couldn't catch her breath and freaked out (me, too). I'm wondering if she's aspirating - she's never acted that way before. I asked the pulmonologist about it this morning and he interrupted me 10x offered to order a swallow study for her, which I quickly accepted. (What's one more test at this point? Bring it on.) So...I haven't tried any more PO feeds in 3 days. Scold me if you wish, but if you had seen her turn colors while gasping for air and then freaking out b/c she couldn't breathe, I'm pretty sure you would do the same. =)
This week holds a lot of appointments (what week doesn't?) - she had the pulmonologist today for her last Synagis shot. Thankfully....those things are awful and I'm not very fond of her 12-year old immature and rude pulmonologist lately, but I AM grateful for the RSV protection they've offered her.
On Tuesdays we have occupational therapy - tomorrow her tx wants to try feeding her. I wish her the best of luck but this child doesn't eat for anyone else. Half the time she doesn't even eat for me.
On Wednesdays we have physical therapy - she is currently doing exercises to loosen her tight neck muscles (Ruthie doesn't care to look to the left to see if there might be anything interesting on that side) and her plagiocephaly (preemie-head). Bet you never thought you'd hear some of these weird terms, huh? Me either.
On Thursdays, her early interventionist comes for therapy. She does well for her, for the most part. I would, too. Who doesn't love Carolyn? =) She is one of the sweetest, most genuine people I've ever met.
Fridays.....we have off, and I'm trying my hardest to keep it that way. However, this Friday Ruthie is going for her nuclear scan to test for gastroparesis (delayed gastric emptying). I've been screaming saying nicely for months that this child does not digest properly. Whether it's from the milk allergy or continued reflux or a combination of the two or some random component, she does not digest normally. Before starting Elecare, she would throw up 3 hours after eating - milk curdles or a full feeding. That's not normal. So this test will determine whether or not she truly has any kind of delayed gastric emptying or slow motility in either the stomach or the intestines. Since being on 24/7 feeds, her pooping has greatly increased (she's going to love me one day for talking about this so publicly) and that's a great thing for her - she's never been an every day or even every-other-day pooper. I'm having to get used to changing multiple poops a day. This test involves giving her some formula (g-tube, unless they want to battle with her to eat something) laced with a small amount of radioisotope and they will take x-rays every 5 minutes for the next 1.5-6 hours (depending on how long it takes her to digest it.....we might be there all weekend) to see how/where it all goes.
Tired yet? =)
We experienced some "normalcy" yesterday as we (Daddy, Momma, & Ruthie) all ventured out together for our very first outing that didn't include a doctor of some sort. We went to the dump (we live large over here in Greer), Tractor Supply (we waited in the car for Daddy), Home Depot, and :::gasp::: Walmart. Ruthie stayed in the Moby and was FASCINATED by all the weirdos nice folks in Walmart. (Aren't we all.) She kept staring at people with an awed look on her face - it was hilarious. It was so nice to feel somewhat normal. Gotta go somewhere? Pack up the baby and go.
And she didn't get RSV.
And now for the best part - pictures! I included one of Ruthie's BELOVED favorite toy - Ella Funt. I bought this new on Ebay and she LOOOOOOVES it.
No comments:
Post a Comment