Posted By Posting
Aug 11, 2004
Carla
My daughter stopped breathing during a reflux episode post-fundo
Hi, My daughter is almost 2 and a half, and post fundo. She had one this past Feb. 4th, 2004. We submitted a successful-fundo story to this web site about 2 months after the surgery. Now, 6 and a half months later, she is refluxing again. She has subglottic stenosis (a narrowed airway in the throat) as a result of scarring from reflux pre-fundo, and coughs chornically due to extreme congestion. So, she is on a nebulizer that distributes Atrovent to keep her airway open and to stop the production of this mucus. It keeps her from having stridor (a labored breathing sound associated with croup as a result of a narrowed airway in the throat) and quiets the cough. She is also taking Prevacid and seemed to do okay with it for awhile. However, last night, for the 1st time since before starting the Prevacid, she woke up crying and was unconsolale for 2 hours. After 2 hours of crying and refluxing (it doesn't come out, just up and back down), I heard, again, all this liquid come up, and she started choking on it. She couldn't clear it and started to turn blue because she completely stopped breathing. We hit her back, blew quick puffs of air into her face, moved her into different upright positions (she was already awake and upright when this started) until finally, she gagged hard enough that she cleared it and it went back down. She let out this loud scream and arched her back, then just started crying again. At that point, the stridor came back for the 1st time in 2 months, because the acid clearly burned her throat. This episode seemed to come out of no where, and hasn't happened since a week before she had the fundo 6 months ago. She is having an endoscopy on Tuesday (the 17th), and at this point, I am so afraid of what they will find. They speculate that the wrap either came undone, or that she re-herniated the hiatus causing it to go through the wrap. No wretching ever, just A lOT of chronic coughing and stridor. Both coughing and stridor pulls at the diaphragm, causing a lot of stress and can pull the stomach upwards. It can also make the stictches pop open. I am so frustrated that there seems to be no clear cut answer to the question "What is the right thing to do?"! If we do another fundo, what would keep the same thing from happening again?!! We tried Reglan, and she had Parkinsons-like symptoms. Erythormycin for motility upset her stomach. She clearly has some kind of a motility issue because this episode last night was 5 hours after the last time she ate, and by the way it wasn't anything that she normally has trouble with! We have Carafate, but have yet to try it because it has to be given two hours before, and two hours after a meal. She doesn't eat meals; she grazes throughout the day and there is never a 2 hour break in between. It's a miracle that we have got her to eat again, because she ate next to nothing for almost a month. I don't want to mess with a good thing, now that she eats again, by telling her that she has to wait another hour before she can eat again. We haven't tried Prilosec yet post fundo because the prevacid has seemed to be somewhat effective in minimizing the pain (until a breakthrough episode happened last night). But I know that neither Prilosec or Prevacid stops her from refluxing. She can choke and stop breathing whether or not there is acid in the liquid. She also takes Miralax for her stool, and Nasonex to help with the congestion. I don't know what I am looking for in telling you all of this. We have tried everything...I just feel so imprisoned by reflux. I think I just needed to vent to a bunch of parents who know what I live everyday. It torments my daughter and our family and I wish we could find something that cured her from this awful dreadful disease. Any insight that could help us figure out what to do---any tips, things we haven't tried yet, things to keep her from stopping breathing again--anything would be much appreciated. Thanks, Carla Gorecki San Clemente, California tccgorecki@cox.net
Aug 17, 2004
Wanda, Atlanta
Oh...What a difficult situation to be in. Good luck with everything. I wish you the best in trying to figuire out what to do.
Aug 20, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Thanks Wanda
Thanks for the well wishes....she had an endoscopy and has another hernia. Fortunately though she doesn't have esophagitis again. I think it's because I recognized it right away; she had prevacid early enough this time. She is going to have a ph study done again too to decide how bad the reflux is. If it isn't that bad the hernia may not necessarily need to be fixed. Because of the apnea, it is still being considered. The wrap is still intact even though there is a hernia through it...I am relieved about that because even though she is refluxing again, it could have been worse! Thanks again... Carla
Sep 11, 2004
Tina
I felt like I was reading my own experience all over again. Our son, Jamie did very well post-Nissen. Two months later the nightmare began. He was vomitting everything(including liquids) I had refused a G-Tube so I was racing against time to find out why this was happening. He went for a dilatation and they said there was no narrowing. It was a motility problem and set a surgery date for a G-Tube. I did a little research and found a physical therapist who specializes in integrative manual therapy and we saw him ASAP. He worked to stimulate the Vegas Nerve to help with swallowing. Within 2 weeks , Jamie was back to liquids and 2 more weeks he was eating thinned blended food. We are now 1 year post-op and he is still seeing Jay 2 times a week and is eating Bugles, popcorn and Funyuns! We still blend his food to a thick consistency and occasionally, (1 time every 6-7 weeks) he may vomit. Jay is truly our hero and Jamie is finally enjoying his ability to eat again.Please feel free to contact me @ Cmc81888@aol.com if I can be of more assistance. I will keep you in my thoughts as I know the hellish nightmare we went through.
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