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Old 04-17-2010, 08:52 PM   #1
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Trang123 HB User
green bile then death in child

Hi,

My son was born with a metabolic disorder, a mitochondrial encephalomyopathy...probably Leighs, but not correctly diagnosed. For last 3 years of his 6 years I fed him via naso gastric tube, inserted every 5 days, as doctors said he was too fragile to under a G-Tube put in place. Also I was in a Country where silicone tubes were not available, so had to use the ordinary short term plastic NG Tubes. I had to change them after 5 days, as the gastric contents made the end of the tube very hard, trial and error, I was not warned about this, just go home and do best you can the doctors said. My son was in semi vegetative state, communication via eyes only. The morning he passed away, which was 10 years ago this year, but feels like yesterday, I always used to draw up a little stomach content to make sure the tube was still correctly placed in stomach, and used litmus paper to double check the tube was in tummy, stomach contents turn pink on litmus blue paper. This time i drew up pure green bile. I had to give seizure meds via tube which I did, and decided to hold off for an hour or so with his milk formula feeding via tube. He died within this hour. My question is was this bile due to liver failure, obstruction of intestine? He had severe chest infection at the time, which was cause of death, although he was on 2 anti biotics, he was too fragile to do physio on him as we would have cracked a rib for sure, so at age 6 years 11 months, weighing in at 10 kg's, all we could do was suction every 5 to 10 minutes and feed very slowly about 5 mls per minute, that's how bad he was. Doctors had refused to offer any treatment and I was told to continue doing what I was, I had mini icu set up at home, oxygen, tubes, suction machine etc....and all I was given was morphine for him, which I refused to give, I thank God I never used it.
My question is, what could have caused this green bile? Because of copious amounts of secretions, I found out through experience, just for interest, that Rivotril ( I used drops used to control seizures ) causes massive secretions in children. I had to suction 10 to 15 minutes throughout the day and night, I made sure he was replaced this liquid loss with constant feeding, but very very slowly as he could not tolerate normal feeding volumes tubally or would projectile vomit.
Sad lesson I learned was how quick doctors give up on a little child who they see has no hope, and ignores a mothers precious love to keep her child pain free, safe, comfortable and loved, just like any other parent child love out there.

Last edited by Trang123; 04-17-2010 at 11:43 PM.

 
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Old 04-20-2010, 12:58 PM   #2
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tynkergirl HB User
Re: green bile then death in child

did you ever look into a duodenal atresia?? atresias in the digestive area will cause the green bile. its something to look in to.

 
Old 04-20-2010, 02:53 PM   #3
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Re: green bile then death in child

I'm so sorry you and your son had to go through such difficult times.

I think towards the end of life the bodily systems start breaking down. Excessive bile in the stomach is called duodenogastric reflux. The combination of his poor health in general and then respiratory infection on top of it all I believe contributed to the breakdown of his GI tract.

You were handed a very hard hand to play, but your son was fortunate to have a mom that stayed and cared for him to the end.

 
Old 04-21-2010, 02:58 PM   #4
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Re: green bile then death in child

Quote:
Originally Posted by tynkergirl View Post
did you ever look into a duodenal atresia?? atresias in the digestive area will cause the green bile. its something to look in to.
Hi there,

Thank you so much for your reply. I really appreciate your suggestion, but I don't think duodenal atresia was the cause, because he was a month short of 7 years old, and normal emptying of contents of large intestine appeared to be working fine,although he only weighed 10 kg's. I may be wrong, just my gut feeling. doctors confirmed, he had double pnemonia and to add to his problems, excessive mucous, due to meds for seizure ( Rivotril ) . all I could do was make sure I moved him from one side to the other every 2 hours...this was difficult because he had extremely severe kypho scoliosis ( extremely bent back ) and his favourate side was his left, but I had to move him for pressure sore reasons and also accumulation of mucous in lungs. As I mentioned, I suctioned him every 10 minutes. The doctor said cause of death was not his rare disorder, but due to pnemonia. I know deep down, that his disorder was so severe it would take my precious son one day, the calcification in brain was just too severe and getting worse. Nothing was ever mentioned again about the green bile. I guess even years later I am trying to get an answer, in the hopes that it may one day help another mother out there.

 
Old 04-21-2010, 03:06 PM   #5
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Re: green bile then death in child

Quote:
Originally Posted by Mari526 View Post
I'm so sorry you and your son had to go through such difficult times.

I think towards the end of life the bodily systems start breaking down. Excessive bile in the stomach is called duodenogastric reflux. The combination of his poor health in general and then respiratory infection on top of it all I believe contributed to the breakdown of his GI tract.

You were handed a very hard hand to play, but your son was fortunate to have a mom that stayed and cared for him to the end.
Thank you so much for your reply and kind words Mari256,

I agree with you what you said here, it makes absolute sense. I adored my little son, medically he had doctors dumbfounded as to why he was still alive.... I agree it was one heck of a hand to be dealt with in life, but more so, what my son went through... every mothers worst nightmare, watching your child suffer and losing your child.

 
Old 05-10-2010, 08:54 PM   #6
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Re: green bile then death in child

I am saddened to hear of your experience with your dear son. You are indeed a great mother. I hope you have other children to bask in your loving care. Thank you for writing in. Having responses to your situation may help you more with closure.

You didn't do anything wrong. God chooses His own time to take His children Home. He gave you your tiny son so you could teach your boy love and also, maybe, so you could discuss your son's condition on this website and possibly help other parents who have children with this same, or similar condition.

No matter how much you loved your son you were under such severe stress for nearly seven years. It's amazing you survived. I hope you are well.

 
Old 06-13-2010, 05:16 AM   #7
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Re: green bile then death in child

Found your post by googling green bile in gastric tube. My 3 year old is again in the PICU with pnuemonia and now green bile is coming out of the gastric part of her GJ tube. We also have set up a hosp. room and home knowing that someday this will take her life. She has Cornelia De Lange syndrome and was born at 28wks with two brain bleeds following birth. Too complicated to list all health problems but I wanted to offer my heartfelt sympathy to you as one mother to another. Although we adopt our disabled children we love them all as much as our bio children. Never knowing you I feel the pain in your written words and hope that someday you will realize that you kept your precious angel here on earth against all odds. I am sure he knew you loved him so. Two weeks ago we signed a DNR and that will always be a hard decision to live with. We won't give up on Bonnie ever but I understand the pain of watching you little innocent babe suffer so much and ask only for love and comfort. Your pain brings me to tears (my current state most days) and I pray you find comfort as I also pray I continue to have the strength as Bonnies Mom to follow this path. I worry that losing her will be an insurmountable grief. Thank you for letting me unload a bit and for listening. Sincerely and in prayer

 
Old 06-14-2010, 04:58 AM   #8
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Re: green bile then death in child

Thank you so much for your lovely words. I still battle to this day, as my ex was misbehaving for 7 years during this time. It has changed me but I am studying at a university to be in a position to help other mothers.I am doing Pediatrics and branching off to rare disorders. :-)

 
Old 06-14-2010, 05:09 AM   #9
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Re: green bile then death in child

You sound like a really special lady. hang in there, you're doing great. Green bile is produced by liver. Ask them to just do a basic liver function test. my sons veins had got to a stage where taking blood was impossible, he was critical in the last few weeks, adn at home. the hospital did not even want the responsibility of him there, this was
South Africa....I have no problem saying which Country as they did absolutely NOTHING for my son. If it is a metabolic disorder of some sort, which can affect young children by developmental delays, cerebral palsy etc.... just a basic screening for tests will rule out certain things.Keep a diary and write down every food you give her and how she reacts, meds too. Rivotril caused massive hyposalivation in my son.certain old epileptic drub used on him caused 40 fits a day until i took him off myself. so just use common sense. Foods as harmless as they may be, like a spoon of sugar or honey or an egg scrambled in butter can be fatal.....for some kids with rare disorders. Just get a basic screening test done. i will always be here for you and my heart goes out to you. God Bless you and all that you are doing. Wish there were more moms liike you out there :-)
Most parents don't look at breathing.... heavy laboured breathing, kusmal breathing all mean things...my son had build up of lactic acid as he had a block in metabolising sugar into energy simple explanation) and he build up lactic acid and carbon dioxide, which slowly killed off his brain cells. All they had to do was give O2 to breath off the Carbon Dioxide and I used good old bicarbonate of soda to help with the lactic acid, it did to a point. anything I can offer, please just ask.

hugs

xx

 
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