Ottakee Posted November 16, 2017 Share Posted November 16, 2017 (edited) Did I miss an update on what the neurologist said? How is the NG tube going? Edited November 16, 2017 by Ottakee 3 Quote Link to comment Share on other sites More sharing options...
kiwik Posted November 17, 2017 Share Posted November 17, 2017 Bump Quote Link to comment Share on other sites More sharing options...
Daria Posted November 17, 2017 Share Posted November 17, 2017 I'm hoping that no news is good news, and thinking of you and Benny. 1 Quote Link to comment Share on other sites More sharing options...
Mom25girls Posted November 18, 2017 Share Posted November 18, 2017 I've been thinking about you and Benny and am grateful that someone started this thread. Quote Link to comment Share on other sites More sharing options...
cintinative Posted November 19, 2017 Share Posted November 19, 2017 Bump. How's life in Ohio Articmama?? Quote Link to comment Share on other sites More sharing options...
FriedClams Posted November 19, 2017 Share Posted November 19, 2017 And we need pictures of his adorableness. :-) 2 Quote Link to comment Share on other sites More sharing options...
Twigs Posted November 19, 2017 Share Posted November 19, 2017 Thanks for the update, Arctic Mama. Quote Link to comment Share on other sites More sharing options...
Daria Posted November 19, 2017 Share Posted November 19, 2017 Thank goodness for no spasms. I hope he adjusts to the NG tube, and you get the PEG or button soon. I have heard so much about difficulties with the NG, and in comparison to what I hear, the PEG was so easy. I hope you have the same experience. Also, I'm a big advocate for slowing down feedings, especially overnight. For my kid, slow G-tube feelings was what finally got us past severe reflux and let my kid start to grow and thrive. Quote Link to comment Share on other sites More sharing options...
Daria Posted November 19, 2017 Share Posted November 19, 2017 I know, I couldn’t believe the gastro when he said many families had g tube complaints over NG. I think he’s just biased toward less invasive, which I generally think is a really good quality in a doc! I don’t think they want us to go straight to the button but we will see. I agree about the slower feeds - his boluses are 130 ml over an hour, which is pushing it on speed but way less reflux than the gravity feeds were, and overnight is 400 ml for ten hours total, and we have no pain or discomfort there at all with that. It’s been a good fit overall at night. But the daytime volume is tough on him, between sheer quantity and speed. And that’s why I think he’s backing up into the Farrell bag. He also still isn’t having a lot of dirty diapers and I’m wondering if slow motility is to blame, which is common with kiddos with CP. He’s always been a very infrequent pooper. For my kid, we ended up doing the same speed (I don't remember exactly what it was), for 18 hours a day. The doctor said to get it in whenever it was convenient, so we'd just plug him in whenever he was contained, such as in the car, in the stroller, in the highchair eating. I wonder if you could up the overnight feeds a little, say 45 ml/hour for 11 hours, and buy you a little more space in the daytime boluses. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted November 19, 2017 Author Share Posted November 19, 2017 Thanks for the updates. I can't imagine trying to keep an NG tube in an older baby. I hope they approve the G tube and can do that soon. From my experiences at work they can be so helpful and convenient. Hopefully that would help the oral feeds too as he wouldn't have that tube down his throat. Glad to hear though that he is sleeping better.....and I hope that means mom can sleep better as well. 1 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted November 19, 2017 Share Posted November 19, 2017 Thanks for the update, hope they can do the g tube soon. The not pooping may be due to the double combo of slow motility and pediasure, since he had breastmilk before. That will also tend to make more back up into the Farrell bag. Let gastro know about that too, lots to try for that. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted November 19, 2017 Share Posted November 19, 2017 :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Daria Posted November 19, 2017 Share Posted November 19, 2017 I will. He would only poop maybe every seven days or so even when breastfed. The pediasure seems to have sped it up a bit actually, and solids like prunes help too. Benny still seems to like prunes and bananas so I’m going to pick more up and hope the increased fiber and residue in his system gets things moving a bit. You can dilute prunes or prune juice with water and put them through the tube if he's not in the mood. Quote Link to comment Share on other sites More sharing options...
goldberry Posted November 19, 2017 Share Posted November 19, 2017 He would only poop maybe every seven days or so even when breastfed. I had one of those too! We used to start staying home when she was due, because it would always be a blowout! Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted November 19, 2017 Share Posted November 19, 2017 Once you get the feeding stuff sorted out, I would push the neurologist for the longer EEG. He's at known high risk and if he is having seizures, the sooner you get them under control, the better for Benny's development. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 19, 2017 Share Posted November 19, 2017 we don’t have basal ganglia or cerebellum damage, and no cysts or lesions, so in her opinion we have a good long term prognosis and that’s what his condition at present would indicate too. Her positivity was really nice. This is huge. So many functions rely on basal ganglia and cerebellum. Yeah for Benny! :hurray: Quote Link to comment Share on other sites More sharing options...
Daria Posted November 19, 2017 Share Posted November 19, 2017 Constipation or low motility can be a problem with a tube, because they reduce the volume of the child's stomach, which reduces the amount of formula that the child can tolerate it. Plus, many kids who have tubes are on concentrated formula feeds (like Benny) which means both less water and less fiber. My experience was that I needed to be very aggressive about treating the constipation, more than I would for a typical kid who was going the same amount of time between poops, and was having similar textured poop. Here are a few things I learned. 1) Fruit, especially those prunes. Put them in the tube, if need be. Obviously not a huge quantity, but if a typical kid his age would be eating a baby food jar full (or is it now a pouch full?), then I'd feel safe doing the same. 2) Free water. I seriously didn't discover this until my kid, who got his tube at 9 months, was 2, and then it was a life changer. My kid who needed 50 cc/hour for formula, and delayed emptying, had no problem with faster feeds of water. I could give him 60 cc of water over 20, take a break, and 1/2 an hour later his stomach would be totally empty. This had 2 advantages. One is that the extra water helped him poop. The other is that it stretched his stomach a little, allowing us to work towards a faster feeding rate. 3) Swimming, or even just hanging out in the bathtub, was hugely helpful for my son's constipation. This wasn't an option for us when he was little, because he was a kid who aspirated and was hugely obsessed with drinking the water, but given that Benny doesn't aspirate, I'd try it now. A neck float can allow a kid who isn't experience a lot of varied movement on land, to be much more free in the water, and experience some of the rotational movement that can be really helpful. Watch this video to give you an idea of what I mean. 1 Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted November 19, 2017 Share Posted November 19, 2017 The stander also helped with motility, if you’re able to find a loaner. We ultimately had to resort to a glycerine suppository every day, but we tried a lot of other things first (prunes, mirilax, extra water, milk of magnesia... whatever other tricks GI recommended that I’m blanking on now) Quote Link to comment Share on other sites More sharing options...
Hilltopmom Posted November 19, 2017 Share Posted November 19, 2017 He’s getting so big! Quote Link to comment Share on other sites More sharing options...
Ottakee Posted November 19, 2017 Author Share Posted November 19, 2017 So big, so cute. I love how he is playing with his toys. Not to negate his struggles at all but he has so many positive skills/abilities I can see in the pictures. Keep up the great work. We use the neck floats at school for our students 3-26 to allow them to swim. The movement is so great for them. 2 Quote Link to comment Share on other sites More sharing options...
Lady Marmalade Posted November 19, 2017 Share Posted November 19, 2017 Got pictures. Here is the hilarious amount of tape bits to try and prevent him from pulling out his tube, and it’s still pulling away 😒 http://vsco.co/mulverry/media/5a11edf45e5c1d4f0f4b156a?share=MTUxMTEyNDQ5Mw%3D%3D And showing his toy who is boss during his feed: http://vsco.co/mulverry/media/5a11ee785e5c1d4f0f4b156b?share=MTUxMTEyNDYzOA%3D%3D :w00t: :001_tt1: :001_wub: All that cuteness! Thanks for sharing! 1 Quote Link to comment Share on other sites More sharing options...
Daria Posted November 19, 2017 Share Posted November 19, 2017 Somehow, I missed the pictures! I swear he gets cuter every time you post a picture. Quote Link to comment Share on other sites More sharing options...
FriedClams Posted November 20, 2017 Share Posted November 20, 2017 Somehow, I missed the pictures! I swear he gets cuter every time you post a picture. Totally agree!!! Adorbs!!! Quote Link to comment Share on other sites More sharing options...
Ali in OR Posted November 20, 2017 Share Posted November 20, 2017 And so much hair! My babies were all pretty much bald until 2. Quote Link to comment Share on other sites More sharing options...
applethyme Posted November 20, 2017 Share Posted November 20, 2017 My son has had a gtube since he was 6 months old. Best. thing. ever. Once he was crawling, I could put his feeds in a back pack with his pump and he could crawl and still get fed. In the car I just hung the feeding bags from the hook over the window using baby linking rings. Life was better once we were able to do slow, steady feeds as my son was never able to tolerate rapid boluses. Quote Link to comment Share on other sites More sharing options...
mom@shiloh Posted November 20, 2017 Share Posted November 20, 2017 He is adorable! Quote Link to comment Share on other sites More sharing options...
ktgrok Posted November 20, 2017 Share Posted November 20, 2017 And so much hair! My babies were all pretty much bald until 2. That's what I was thinking! I swear Benny has more hair than my 5 yr old! He's adorable! 1 Quote Link to comment Share on other sites More sharing options...
Scarlett Posted November 20, 2017 Share Posted November 20, 2017 Got pictures. Here is the hilarious amount of tape bits to try and prevent him from pulling out his tube, and it’s still pulling away 😒 http://vsco.co/mulverry/media/5a11edf45e5c1d4f0f4b156a?share=MTUxMTEyNDQ5Mw%3D%3D And showing his toy who is boss during his feed: http://vsco.co/mulverry/media/5a11ee785e5c1d4f0f4b156b?share=MTUxMTEyNDYzOA%3D%3D He is super cute. Quote Link to comment Share on other sites More sharing options...
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