|Dec 13, 2012|
Should I do a G tubeMy son is 3 months adjusted, born a twin at 32 weeks. J.J. had PDA surgery that left him with a paralyzed left side vocal chord. He came home after 11 weeks in the NICU with NG tube. Although we were trained on replacing his NG tube the first night he was home he puked it out and it took 4 tries to get it back in. It was a total nightmare. So we no longer replace it ourselves.
He wasn’t diagnosed with reflux until several weeks after his homecoming. He is on Prevacid, Zantac, and Elecare. Currently, we are using a continuous drip at night and trying to work up on bolus feeds during the day. He takes the bottle some off and on but he’s not a big fan right now. We are fortunate to have a great team at Children’s. GI nurse practioner, OT, and Dietician.
I am hesitantly considering a G tube for various reasons. J.J. was really traumatized by the events of his PDA surgery. He really goes crazy when I try to change his tape which needs to be done every couple of days. For myself I think I have a little PTSD from his post surgery intubation and suctioning because his upset takes me back to that horrible scene. I am concerned about the NG contributing to his reflux and swallow issues created be the paralysis. I am also always fearful of the tube coming out and the trauma of putting one back in.
Any advice or stories about going from NG to G tubes?
|Dec 15, 2012|
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
|I only have a minute right now, but I want to direct you to a book I would love you to look into. It's called "Trauma Through A Child's Eyes" by Peter Levine and Maggie Kline. It's a very accessible and clear text on PTSD, which applies to both children and adults, and it can give you some ideas for how to support and understand your son's situation and possibly your own, as well, both now and in the future. It was a miracle for both my son son, and me -- really helped take us from him appearing to be on the autism spectrum, and me being a general wreck all the time, to a whole different level of health. Worth a serious read, as it may help in your deliberations about surgery, and could definitely be of help in supporting him through whatever choice you end up making.|
|Dec 20, 2012|
To G or not to GLet me begin by saying congrats on those beautiful babies!!! What a gift! I come on this every once in awhile to see if there are words of wisdom that I can offer to anyone. We have a gtube for seven years now but it was no easy battle to get to that point. I hear fear and pain in your post. We had to go from ng-nj-g-gj-g-tpn-j-g-gj- i think i missed a few changes in between but my point is you dont want to go there.
There is so much trauma not only physically but emotionally going on with tubes going in and out like a revolving door. We had other issues for all of these changes but since this time I have learned one big thing do whatt your heart tells you. There are a lot of things to weigh out medically. Also I have found there are gtube happy drs and then drs who will try anything besides going to the moon not to place one.
Isabella has unfortunately never been a bolus kid because of delayed emptying so I really dont know how that works with ng tubes. We have done what i call mini boluses but never anything over 6 ozs.
I know that this is overwhelming and im sorry you are in this place but as all the people say here hold on tight it may be a roller coaster ride. keep posting and ask questions and people will post their feelings and thoughts. Many hugs to you and your family. Where are the kids being treated?
|Dec 21, 2012|
|We are being treated at Seattle Children's by a wonderful team as well as my local Ped. We just finished up a 2 day trial after JJ pulled the NG again and he was able to take 12.25 oz a day his minimun is 18-24. He is 3 1/2 months now. He is close but I think he is just going to need more time. The G tube has been a consensus especially since he has started pulling out his NG more often. ||Check with your