I guess I am in the wait and see with assistance mode.  I am an ex g-tube fed premie turned mom with identical twins born at 27 weeks.  They have different disabilities...but one has more medical diagnosis than there are letters in the alphabet.

We were told he should never eat by mouth as it was way too dangerous because of the risk of aspiration.  There are tremendous medical malpractice risks for the drs., speech therapists etc...if they don't make you aware of this potential  ......anyway they can also aspirate on their own saliva, vomit (if they happen too), reflux if they have that etc etc etc....anyway..I have never enjoyed eating...even though I totally eat by mouth now..but I have tremendous texture issues and other things....anyway I fought everyone...and we remained g-tube free for our son...but our son truly enjoyed eating...although it was laborious for me and extremely time consuming...it has been one of his only real pleasures in life.

He is now 16 and has ended up with an ng tube and then TPN because he is terminal now from a rare form of dystonia which has made it impossible to swallow and has affected his heart and diaphragm etc...but I can tell you before he was hit with this about 1 year ago...he never had a single round of pneumonia...as the result of aspiration...and the eating gave him extreme pleasure...but we had a very dedicated support team helping us to learn to feed him safely...but they did take "risks" because there was always that chance of aspiration...but even a typical child could aspirate if they drank their drink too fast...Our son ate everything from his favorite McDonalds quarter pounder with cheese to enchiladas (yes we live in Texas)

I guess my goal was for our son to live as completely and fully as he possibly could..and the g-tube seemed the easy way out for everyone.  Before he became as terribly ill as he is now we did have a couple of times that we put an ng down to help keep up with hydration etc while he had the flu etc...but I would say that was probably a total of two or three times in 15 years and each time for maybe a week.

We lived on the edge...despite his severe cerebral palsy he had the opportunity to go both snow and water skiing, floating the river and riding every ride at a water park called Schlitterbahn.  Anyway, we have lived life to the fullest while we could.

Cheryl




-----Original Message-----
>From: Jennifer Gunter <[log in to unmask]>
>Sent: Jun 6, 2010 3:37 PM
>To: [log in to unmask]
>Subject: To place a feeding tube or not
>
>I'm going to try and make this short. I have a 10 1/2 month old son (Jaco=
>b) that was part of a spontanious triplet pregnancy. He was an identical =
>twin and suffered from Twin to twin transfusion when he was born. His ide=
>ntical brother (Logan)  passed aways at 6 months 12 days with respiratory=
> failure. He also a  fraternal brother (Andrew) who is fine. They were de=
>livered at 28 weeks to "save" his brother Logan who was not doing well fr=
>om the TTTS. Jacob was the recipent of the TTTS Logan the donor.
>
>He was in NICU 67 days. 2 days before discharge I was told he had multi c=
>ystic encephalmacia (brain softening) covering almost his entire peridal =
>lobe on both sides of the brain and into the right frontal lobe.
>
>Since he has come home he has always had some feeding issues. Development=
>ally he is still at a 2-3 month old range. He smiles and laughs. He track=
>s when he feels like it. His joints are tight. He arches alot. He does no=
>t sit up or roll over. He has a hard time holding his head up. Sometimes =
>when he eats you would not know anything is wrong with him. Other times h=
>e chocks and gags the entire feeding. He has been between 17 and 18lbs fo=
>r almost 3 months. Not really gaining or loosing. Since the end of April =
>he has been diagnosed with Right upper lobe pnumonia and mild pneumonia o=
>n both sides of his lungs a week ago. We did a swollow study 2 weeks ago =
>showing he has silent aspiration on thin liquids when his had is tilted b=
>ack or when it is to the right. He did much better with necter thick liqu=
>ids at a 70-90 degree angle with his chin down and head strait of to the =
>left. He will be starting next week seeing a Speech T. next week. She sai=
>d he is sucking to fast and the milk is pooling in his throat before he c=
>an swollow then he is aspirating. I seen a GI doc this passed friday and =
>I was told I can have a g-tube placed or I can continue to work with ST s=
>he also wants to up his calories on his formula from 22 to 24.=20
>
>I am really stuck on what to do. He does take over an hour to feed at tim=
>es and I was told I could feed him by mouth when he tolerates it and g-tu=
>be the rest. I just don't know if I am ready to except that he may need t=
>his g-tube or constantly worry about pneumonia and aspiration, because if=
> I am able to feed him by mouth anyways he could still aspirate and the g=
>-tube does not solve anything but convience of not having to spend more t=
>han an hour feeding him. When he is not sick he eats fair when he is sick=
> (which has been ALOT) he gags more.
>
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