Posted By Posting
Sep 29, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
Surgery Stories
Hello! Please share your surgery stories with other parents. Here are some questions for you: 1. Why did your child need surgery? 2. What are some important questions to ask the doctor? 3. What was it like before, during and after the surgery? 4. What happened when you got home? What was the recovery like? 5. Is your child better, worse or the same after the surgery? 6. What is the parents point of view: feelings, concerns, etc. Many thanks for helping other parents understand GERD surgery. It is very powerful getting this type of information from another parent who has been there. Jan
Oct 17, 2007
gabe's mom
Our Story
Gabriel had surgery on September 10. He has suffered from GERD his whole life (he is 3 1/2). Overall he looked like a healthy kid, but he was not a happy or healthy one in reality. He had tonsils and adenoids removed at 2 1/2 from chronic sinus infections/enlarged tonsils from his reflux. He had a chronic cough - especially at night laying down. Some days he would eat - some days he would not. It seemed as he was getting older - his eating habbits were getting worse. We have been on every med. changed every aspect of his diet - elevated his bed - we have been through it all. I was tired of seeing my son hurt and we as a family made a desicion to do the nissen surgery as we felt this was affecting his overall lifestyle and would only get worse... Well, the night of surgery I recall laying next to him - just staring at him to see if he was going to reflux. He had some ice chips that afternoon as that was what he was instructed he could have.. He DID still seem to be refluxing - I was sick to my stomach just watching his mouth and his face - that face he made before the surgery like someone dropped poisen in his mouth and it was just burning him alive. I was like no, this can't be - he has not eaten or drank anything, but ice... I asked the night nurse and she said that babies that come in who have this procedure done still tend to vomit after surgery and this was common because the esoph. was so swollen things just didn't go down so, maybe it was the ice not going down to well and well, I just knew he was still doing it - I am his mom and watched him do this since he was a tiny baby - this "face" that I describe... He came out of surgery with flying colors - eating doughnuts, drinking smoothies - he did great in terms of the surgery itself... A few weeks after his surgery he vomited on me a couple of times after eating - I just thought this was part of the recovery process - it could be, but I knew he was still refluxing and it almost seemed like his little body was trying even harder to reflux... Some days he would eat - some days he would not - same as before. It is now 5 weeks post op and he is still refluxing.. I am so lost.. His cough is back - mostly at night when he is laying down. Some days he eats - some not... He still compains every time he eats that his belly hurts. He still does not sleep well at night - some nights he sleeps 12 hours (but not really from refluxing all night) and he will be so exhausted by 10. The GI doc wants to do an upper GI, but I am so tired of tests and I know he is still refluxing... He may not reflux during the upper GI so, I would rather just skip right on to the PH probe at this point to get to the point. I don't want a 50/50 chance if he will reflux or not - I just want it to be done... I feel like is this what life is like - do we just try to move on and deal with our son not feeling well all the time - is there someone that can help us - was the wrap too loose?? He still burps, vomits, etc.. I just don't know - I am at a loss... If anyone knows of any reflux experts - please, let me know - we will fly anywhere..
Oct 18, 2007
We have a son that started for no reason what so ever in May of 05 vomitting. It happened once and I thought nothing of it. Then the next week it happened again. It started like a train getting started slowly then picked up speed and has not stopped. We took him to the doctor in August when it was getting bad and he was diagonised with Giardia. After a few months we got all the Giardia out of his system but the vomitting still lingered. They sent us to the first GI and we had a PH probe that found out that he would send acid back up 100+ times per day. Some of his readings were acid levels of 1 and 2 (the most worst levels you can have) They started him on Regalin and Pevacid at that time. He is still on it today. He stills has episodes but not to the extent that he had at the beginnning. Now they are receommending Fundo surgery. I am really scared to have it done. I have heard many horror stories and not enough prasie for the surgery. I am looking for answers. He has not gained weight in over a year. He gets grumpy during the day because I know the acid is worse 2 hours before he wakes up and he is getting up at 5 or 6 in the morning. I know that there are parents out there that have childern younger than mine and I praise you because I know how hard it is to see my little one that is older go through the same things. I am DESPERATE, we will go anywhere. If you know a great doctor please let me know.
Oct 26, 2007
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
I know of a GREAT doctor in Loma Linda California. Not sure where you are, but I do know that many parents travel miles and countries to get treatment at Loma Linda. Am I allowed to recommend doctors??? Somebody?? -Sarah
Oct 26, 2007
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Jan, i know that i was supposed to write Quinn's story a long time ago, but I guess that time got the best of me. I hope I don't make it too long. I know that I will be leaving ALOT of stuff out. Quinn was born January 17, 2006. She weighed 7lb and was 18 1/4 inches long. She was a product of a full term pregnancy. Aside from her two extra pinkis at birth, she was deemed healthy and was sent home three days later. She was jaundiced for the first week of life, but the California sun cleared it up. While at home, we had been noticing some strange symptoms such as projectile vomitting, excessive sleepiness and brief blue spells. I had taken her to the pediatrician numerous times in the first two weeks, who told me that what I was witnessing was normal infant behavior. But when she was just shy of one month old, we knew that it was far from that! Quinn started to cry. (When Quinn cried, she could not make a sound until she was four months old) I took her to the back room to change her, but she wasn't catching her breath. Quinn was not breathing! She was turning blue. I yelled for my family who rushed in there and my sister called 911. The paramedics came and took her to the ER. By this time, she was requiring a little oxygen. She had a chest xray which showed pneumonia. Quinn was admitted to a hospital 45 minutes from my home. She was in the pediatric floor for about a week, being treated with IV medications for pneumonia. She was a little under weight. One of the nurses witnessed her projectile vomitting and she then had a barium swallow, which showed reflux. The doc said that the reflux was "mild" and could be controlled with just a few instructions. I had to keep her upright and have her sleep at an incline. That was it. Then another doc came in and found a heart murmur. She had an echo done and it showed two small ASD's. The doc said that they would close on their own. We were just days from discharge, according to the doctor when Quinn had another blue spell, the nurse witnessed it and got scared. After her blue spell had continued for well over five minutes, she was quickly engulfed by a parade of medical staff and I, her mother, was pushed off into the corner. Then she was whisked away from me. I can't even express the pain, the emptiness and the hopelessness that I felt at that moment in time. I took a quick glimpse of her limp body and she was gone. I could hear so much commotion in the hallway. I felt a heavy feeling as I got up and peeked into the hallway to see all these parents clutching their own children, staring at me! The looks were like a barrier, blocking me from going any further. Written all over their faces were, "I'm so glad that is not my child." I retrieted back to my room. I waited for over fourty five minutes before i got word from a nurse that she was finally stable. It was a long time before i saw Quinn again. Quinn was brought to me and she looked ok! She had leads to monitor her HR and respiration, but otherwise, she was ok. The doctor was ordering a medi-vac helicopter to come and take her, but the hospital couldn't get one for her right away. That was good because they told me that she was stable enough to ride by ambulance. Her HR was reaching the 260's. She was placed in her little glass incubator and wheeled away from me. I didn't get to see her again for five hours. Quinn was taken to Loma Linda's NICU. She was there for a week and discharged with digonoses of sleep apnea, reflux, two ASD's and sinus tachycardia. That is not where our story ends. Quinn's reflux continued to kick her butt. At four months old, it was practically unbearable. She went through numerous formula and med changes. At six months old, she was a Failure to Thrive baby. At seven months, they threatened the n/g tube. At eight months, Quinn had just learned to sit up. By nine months, a second barium swallow showed that she had dysphagia and nasopharyngeal reflux with some risk for aspiration. She was put into feeding therapy where they diagnosed her with hypotonia. At one year old, Quinn was barely hanging on to 18lbs. At 13mo (Feb. 2007), she was admitted to the hospital for seven days for a failure to thrive work up. Her poop was tested, she had another PH probe. A second UGI, and and endoscopy. Quinn had some esophagitis and her meds were increased again. She was put on a special toddler formula. They said that her reflux was severe enough to warrent a g-tube nissen fundoplication. I refused the surgery in hopes she would eventually get better. She started walking at 14 1/2 months old, however her weakness was always noticable. From Feb. to May, Quinn was admitted numerous times for complications due to the reflux. A minor cold set her back so far, she was put in the hospital. She went through days of food refusal. She was sick constantly. ER trips became a weekly routine. Her g-tube was put in May 18, 2007. She immediately started vomitting even continuous feeds. I begged them to please take her back in and do the nissen fundoplication, but the doctors said that she needed to heal from the g-tube and that surgery was not recommended until then. She stayed for five days. Quinn was admitted again a few weeks after discharge. she was vomitting so forcefully and her diarrhea was horrible. Despite the g-tube, she had become severely dehydrated. She was suffering from a g-tube infection. Quinn stayed this time for about six days. They repeated her ph probe and her reflux remained to be severe. They said again that going back in at that time would risk infection and so we had to wait to get the nissen fundoplication. The g-tube kept her out of the hospital from June to the end of Aug. Her development was taking quite a toll. Quinn was diagnosed with a global developmental delay and was put into all therapies. Her neurologist ordered numerous tests on her. She continues to have unexplained blue spells to this day. she had her surgery Aug. 24, 2007. I was devastated when she started vomitting two days after her surgery. The surgeon said that it was from the swelling. Quinn was put on a pure liquid diet until her fundoplication healed. She was discharged 6 days later. It is now the end of October and Quinn has yet to be put back in the hospital. The surgery has helped her out in more ways than I could think of. I thanked the surgeon for fixing my daughter. It turns out that the surgery was just the thing that she needed. Since the surgery, Quinn has been a much happier kiddo. I never knew the warmth of a cuddling child. Before the fundo, my kid could not settle down enough to cuddle with me. She could not relax enough before the reflux would take over and she screamed and cried all day long. She eats much better too, however still requires some tube feedings. She concentrates much better. She is making great strides in her development. I believe that the fundo along with her therapies are helping her out so much. She is now 21 months old, last weigh in was 21 pounds and she and is starting to mimic our words. Her muscle tone is improving. We went to orthotics and she will be fitted with AFO's soon as insurance approves. Quinn has fought off two infections so far with just some antibiotics, no hospitalizations. What the fundo surgery has done for her is more than I could have ever asked for! There are numerous success stories out there! You just have to keep looking! Quinn continues to have other health issues, but nothing as severe as what her reflux has caused her! We have been so blessed to have been able to find an aswer for her suffering. Thanks for reading this very long story! I promise, I tried to keep it short! he he. -Sarah
Oct 31, 2007
Mum with 4 yr old with silent reflux - resulting in dissolved tooth enamel, and pain
Yeah Quinn!
Thank you so much for sharing Quinn's story, it's so good to hear she is doing better. We are facing fundo surgery for our 4yr old son, so I appreciate finding positive feedback about it. You have been through so much - I hope the future continues to improve.
Check with your
doctor first!