Catherine came over to help and it was hard getting it in! I tried repeatedly to get it past her gag reflex and it just wouldn't go. 
I removed it a couple of times and just as I was thinking I might have to take her to the hospital to have someone else do it - it went down.
The tube near her nose keeps coming out a little and I'm hoping that it won't be like that as it will make it easy for a little finger to grab onto it. Just praying that this one will stay longer. It's just hard on both of us.
Thank you for your prayers. Feeding continues to be a big struggle here. I'm not seeing much to be encouraged about, though I'm still hoping. More and more I can see some benefits to having the Gtube surgery - though the thought of another surgery is not one I can dwell on for long.
Love to you all,
I removed it a couple of times and just as I was thinking I might have to take her to the hospital to have someone else do it - it went down. The tube near her nose keeps coming out a little and I'm hoping that it won't be like that as it will make it easy for a little finger to grab onto it. Just praying that this one will stay longer. It's just hard on both of us.
Thank you for your prayers. Feeding continues to be a big struggle here. I'm not seeing much to be encouraged about, though I'm still hoping. More and more I can see some benefits to having the Gtube surgery - though the thought of another surgery is not one I can dwell on for long.
Love to you all,
Leslie
Posts
Hi Leslie,
ReplyDeleteMy dd had an ng tube for 10 months. It's a hard, hard thing, and unless you've had a child who won't eat - it's nearly impossible to imagine. My heart goes out to you.
I just found your blog today (Karen from my Trisomy 21 board linked it), so I don't know a lot of history. But once my dd's reflux was better managed (the 3rd med), that's when things started to improve for us. I don't know if that could be an issue for you, but I thought I'd throw it out there.
Also, once she did start taking a few ounces at a time, we workd very closely with our GI to try to wean her off. She still doesn't take a lot, and won't eat other than a bottle, but she's been off of the tube for 10 months now which I am very thankful for.
I just wanted to tell you that I do understand your feelings, and taping the tube on her forhead is a genius idea!
If you'd want to talk more, please feel free to email me. mcitro@comcast.net
Megan
Hi there,
ReplyDeleteI too got your link from Karen at Trisomy21online and do not know a lot of the health history here...My son had a g-tube in his stomach until after his open heart surgery. We found it was very important to work with an experienced speech pathologist trained in oral motor therapy to help with his oral aversions and to learn to drink by mouth.
He is now 2 1/2 years old and tube free, eating age appropriate toddler foods that he chews, and drinking from a cup! (straw cup) He does still get his drinks thickened to honey, but I'm sure you'd agree that is better than the alternative.
If you have any questions about our journey, please feel free to e-mail me at: jrenee@neo.rr.com (your daughter is beautiful!)
(p.s. I am the product of homeschooling and am one of 8 children!)
I am also from the T21 board. My son had an ng tube and kangaroo pump for 5 months. During that time we went through a period of very consistently getting "flow error". It would happen at the same time of day and coincided with trying to increase rate. I would stop the feeding and wait a few hours and it would run fine. Without doing the actual test for it, the doc pretty much determined he has delayed gastric emptying. His tummy does blow up after he eats a decent amount. His heart surgery was in the middle of those months and everything began to slowly improve after that for Michael. He began eating by mouth but still only tiny bits. Gradually he has continued to improve over the last few months without any "intensive" feeding therapy. He did have OT and ST once a week though. He also has 9 older brothers and sisters who I think were the best "therapists" for learning to want to eat (they never stop eating!). Please e-mail me anytime if you'd like to. My e-mail is bsherman@cri-search.com. Good luck to you. There were days when I said some pretty nasty things to that pumpLOL.
ReplyDeleteBarb
Hi Leslie,
ReplyDeleteI also saw Karen's post on the T21online board. My son, Mikey, used a Kangaroo pump for several months as well. I can remember all too well how tough it was in the beginning -- but it did get easier.
If I remember correctly, sometimes I would get a flow error when the bag got "suctioned" to itself. I would just open the kangaroo bag and restart the pump and it would run better. (It took me a while to figure that out though and the helpline was no help with this...) I believe there was a helpline number from the place where we ordered additional supplies from and it was a 24hour hotline, maybe it might be hidden in some of you paperwork. I hope this helps, if you need to contact me, please feel free at danifelice@hotmail.com.
Your family is beautiful. Best of luck.
-Danielle
Abigail was also tube feed. After her heart surgery she came home with a NG tube. They never showed me how to put one in. So I would have to go to the hospital to put one in. She had a gtube put in when she was 4 months old. It was a lot easier. She was feed at night only and wouldn't eat during the day at all. I could not imagine not eating for that long. She would eat if lucky 1 once a day. When she was about 7 months old she began eating. She went from 1-28 onces in a week or two. By the time she was 8 months old she was drinking from the bottle. I am not sure but one night she un hooked herself and I am not sure how much milk she got. Ever since that she eats every thing. She is almost 3 and eats everthing. Good luck in the feeding. Your daughter may even eatmore when she doesn't have the feeding tube in her. By the way I am also from T21.
ReplyDeleteThank you to all of you from the T21 board that responded here - and to Karen for posting there about our plight. It has been a hard road. It was necessary to have the tube, but I can also see that it has caused problems as well. Eliana has had the NG now for 4+ months. I'm not seeing much if any improvement in her feedings.
ReplyDeleteThank you for your offers to help. I have a lot of questions about the Gtube regarding surgery and recovery and will be writing to you.
Blessings,
Leslie