Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Does anyone have a child that is trached only because of secretions? Jack's secretions tend to be primarily in his nose. The doctors (who spend less than 10 min. a month with him) are convinced that they are in his throat but when I suction I don't get hardly anything down there. And when he closes his mouth and breathes out of his nose it is so clear that the issue is with his nose. The doctors, especially the pulmonologist who has only seen him once, have started mentioning a trach but I don't feel like this would help with nasal secretions. He is still going to produce the snot whether he is trached or not. Jack does not have issues with oxygenation and is not currently on oxygen. Sometimes I do have trouble getting the secretions out of his nose but it doesn't seem to bother him. Right now we use a Neotech " Little Sucker " . We also use saline to break up the mucus. Does anyone use catheters in the nose or have another suggestion for a suction tip? I just don't want these surgery hungry doctors doing a trach for the heck of it. You better believe I won't let that happen! What types of procedures have helped reduce the amount of nasal secretions? I know I've read that a T&A has helped. Anything else? Thanks! ~ Mom of Jack (7mo. CHARGEr) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 had a trach for 8 months due to choanal atresia. A trach is a big deal and with the situation you describe I can't imagine doing a trach. Just my mom 2 cents! Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (4). Dallas, Texas trach Does anyone have a child that is trached only because of secretions? Jack's secretions tend to be primarily in his nose. The doctors (who spend less than 10 min. a month with him) are convinced that they are in his throat but when I suction I don't get hardly anything down there. And when he closes his mouth and breathes out of his nose it is so clear that the issue is with his nose. The doctors, especially the pulmonologist who has only seen him once, have started mentioning a trach but I don't feel like this would help with nasal secretions. He is still going to produce the snot whether he is trached or not. Jack does not have issues with oxygenation and is not currently on oxygen. Sometimes I do have trouble getting the secretions out of his nose but it doesn't seem to bother him. Right now we use a Neotech " Little Sucker " . We also use saline to break up the mucus. Does anyone use catheters in the nose or have another suggestion for a suction tip? I just don't want these surgery hungry doctors doing a trach for the heck of it. You better believe I won't let that happen! What types of procedures have helped reduce the amount of nasal secretions? I know I've read that a T&A has helped. Anything else? Thanks! ~ Mom of Jack (7mo. CHARGEr) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Hi , My son Evan has copious nasal secretions. He is not trached. Up until about 6 months ago, the portable suction pump was permanently attached to us. For some reason (still not sure what it was), Evan started blowing them out the front of his nose instead of choking on them. And he seems to be making less. We rarely ever suction him now--only when he is sick. But now we never leave the house without a roll of TP (to wipe Evan's nose)...I'll be glad when he is old enough to learn how to blow his own nose. Depending on the " thickness " we have in the past used olive tips, 8 French catheters (lubed well to get the junk that is way back there), and a " home-made " tip comprised of the cut off-tip of a bulb aspirator stuck on the cut-off end of an olive tip (that idea was from another mom on this list--we were careful about running it through the dishwasher frequently to disinfect). In the past he has also been on glycopyrrulate to thicken the secretions a little bit. The " T " word came up for Evan a couple of times. The first time was before he had his Nissen/g-tube done--it turned out his narrow airway was not because of tracheomalacia but due to inflammation from GERD and stomach acid irritating his airway. The second time was when he was about a year old and had a lung infection--it just took his airway a long time to recover from the infection. He was put on CPAP in the hospital and was able to be weaned down to just using it at night (if he had to stay on it all day, then a trach would be recommended because the pressure from the CPAP mask can over time push the mid-face in). He came home on CPAP at night (and still is on it) because of obstructive sleep apnea...presumeable because of secretions that pool and don't get cleared very well. , Mom to Evan (21 months) Waggoner waggoner529@...> wrote: Does anyone have a child that is trached only because of secretions? Jack's secretions tend to be primarily in his nose. The doctors (who spend less than 10 min. a month with him) are convinced that they are in his throat but when I suction I don't get hardly anything down there. And when he closes his mouth and breathes out of his nose it is so clear that the issue is with his nose. The doctors, especially the pulmonologist who has only seen him once, have started mentioning a trach but I don't feel like this would help with nasal secretions. He is still going to produce the snot whether he is trached or not. Jack does not have issues with oxygenation and is not currently on oxygen. Sometimes I do have trouble getting the secretions out of his nose but it doesn't seem to bother him. Right now we use a Neotech " Little Sucker " . We also use saline to break up the mucus. Does anyone use catheters in the nose or have another suggestion for a suction tip? I just don't want these surgery hungry doctors doing a trach for the heck of it. You better believe I won't let that happen! What types of procedures have helped reduce the amount of nasal secretions? I know I've read that a T&A has helped. Anything else? Thanks! ~ Mom of Jack (7mo. CHARGEr) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 i havent ever had a trach but i have had lots of reflux in the past and i cant see the point in traching for secreations r they thinking of helping to suction or soemthing but i dotn think it would i used to b suctioned with otu trach very succesfuly so cant see hy they want to do this unless there r underlying issues they arent telling you about id talk to them and see why they want to do it exactly > > had a trach for 8 months due to choanal atresia. A trach is a big > deal and with the situation you describe I can't imagine doing a trach. Just > my mom 2 cents! > > Lori Myers > Spouse - Trent, Children - (9), (6, CHARGE Syndrome, > Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, > Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing > loss, walking as of 12/22/04!, and Emma (4). > > Dallas, Texas > > trach > > Does anyone have a child that is trached only because of secretions? > Jack's secretions tend to be primarily in his nose. The doctors (who spend > less than 10 min. a month with him) are convinced that they are in his > throat but when I suction I don't get hardly anything down there. And when > he closes his mouth and breathes out of his nose it is so clear that the > issue is with his nose. The doctors, especially the pulmonologist who has > only seen him once, have started mentioning a trach but I don't feel like > this would help with nasal secretions. He is still going to produce the snot > whether he is trached or not. Jack does not have issues with oxygenation and > is not currently on oxygen. Sometimes I do have trouble getting the > secretions out of his nose but it doesn't seem to bother him. Right now we > use a Neotech " Little Sucker " . We also use saline to break up the mucus. > Does anyone use catheters in the nose or have another suggestion for a > suction tip? > > I just don't want these surgery hungry doctors doing a trach for the heck > of it. You better believe I won't let that happen! > > What types of procedures have helped reduce the amount of nasal > secretions? I know I've read that a T&A has helped. Anything else? > > Thanks! > > ~ > Mom of Jack (7mo. CHARGEr) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Good points, Ellen. I agree. I can't help but wonder why the suggestion for a trach is being made. , does Jack desaturate at all due to the secretions? Does he have difficulty breathing because of the secretions? Does his chest pull in dramatically when he is breathing? Does he sound like he wheezes due to the secretions? Has vocal cord paralysis or tracheomalasia been identified in Jack? How is his heart? Does he have apnea? These are some of the conditions that might be expected to lead to a trach. Of course there could be other reasons as well. Some things to consider are that the trach is an artificial opening and can cause either excessive secretions or increased risk of infection. In our daughter's case, both of these conditions existed. When she had her trach removed at three years of age, her secretions improved dramatically and she never again had to be hospitalized for severe respiratory problems or pneumonia. Her trach was initially necessary because she had a double aortic arch which narrowed her trachea substantially. Once that was repaired, she was able to start weaning from the trach tube. While she had the trach, secretions and infections were very problematic. It would be a really good idea to find out the specific reason the doctors are suggesting a trach. Also, is there any chance that reflux or infection is leading to the secretions? So far, it doesn't seem that adequate justification has been presented to you. Your ideas of suctioning the nose with a suction catheter might be really helpful. That technique is certainly something that we did when our daughter was little. Best of luck finding out what is leading to the suggestion. Please keep us posted, . :-) Mom to Kendra, and Camille trach > > Does anyone have a child that is trached only because of secretions? > Jack's secretions tend to be primarily in his nose. The doctors (who spend > less than 10 min. a month with him) are convinced that they are in his > throat but when I suction I don't get hardly anything down there. And when > he closes his mouth and breathes out of his nose it is so clear that the > issue is with his nose. The doctors, especially the pulmonologist who has > only seen him once, have started mentioning a trach but I don't feel like > this would help with nasal secretions. He is still going to produce the snot > whether he is trached or not. Jack does not have issues with oxygenation and > is not currently on oxygen. Sometimes I do have trouble getting the > secretions out of his nose but it doesn't seem to bother him. Right now we > use a Neotech " Little Sucker " . We also use saline to break up the mucus. > Does anyone use catheters in the nose or have another suggestion for a > suction tip? > > I just don't want these surgery hungry doctors doing a trach for the heck > of it. You better believe I won't let that happen! > > What types of procedures have helped reduce the amount of nasal > secretions? I know I've read that a T&A has helped. Anything else? > > Thanks! > > ~ > Mom of Jack (7mo. CHARGEr) > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 Jack doesn't have any dsats or retractions when breathing. We are having a sleep study done in May to determine if apnea is a problem. When he had a swallow study done they did not see any aspiration but they did when they did an endoscopy but it was the volume of milk and they did not see him aspirating secretions. We've since stopped any oral feeding. The pediatrician always comments on how clear his lungs sound, so I'm not really concerned about that. It seems that the trach was almost off the table and then this pulmonologist came into the picture and started to talk to the other doctors and now the pediatrician, the ENT and the pulmo. are suddenly convinced he needs it. This pulmonologist saw him for 15 minutes! Most of it was just talking to me about his history and then he listened to him and said he sounded good! He prescribed pulmozyme nebulizer (which happens to be $1500/month), Jack had a reaction to and it caused a terrible cough. Once this developed he started calling all of the other doctors and convincing them Jack needed a trach. It has been several weeks since we dc'd the pulmozyme and the cough has gone away and we are back to the normal level of secretions. I'm going to need 3 specialists to tell me that it is undeniably necessary before I will let them do it. ~ Mom of Jack (7mo. CHARGEr) trach > > Does anyone have a child that is trached only because of secretions? > Jack's secretions tend to be primarily in his nose. The doctors (who spend > less than 10 min. a month with him) are convinced that they are in his > throat but when I suction I don't get hardly anything down there. And when > he closes his mouth and breathes out of his nose it is so clear that the > issue is with his nose. The doctors, especially the pulmonologist who has > only seen him once, have started mentioning a trach but I don't feel like > this would help with nasal secretions. He is still going to produce the snot > whether he is trached or not. Jack does not have issues with oxygenation and > is not currently on oxygen. Sometimes I do have trouble getting the > secretions out of his nose but it doesn't seem to bother him. Right now we > use a Neotech " Little Sucker " . We also use saline to break up the mucus. > Does anyone use catheters in the nose or have another suggestion for a > suction tip? > > I just don't want these surgery hungry doctors doing a trach for the heck > of it. You better believe I won't let that happen! > > What types of procedures have helped reduce the amount of nasal > secretions? I know I've read that a T&A has helped. Anything else? > > Thanks! > > ~ > Mom of Jack (7mo. CHARGEr) > > ____________ _________ _________ _________ _________ __ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2007 Report Share Posted April 16, 2007 That certainly makes sense, to have clear-cut reasons and documentation of the necessity. I hope you are able to access the information you need to participate in this important decision. And it's definitely not unheard of to get second opinions if you are not satisfied with information that is being presented to you. Very best to you and Jack, Mom to Kendra, Camille and trach > > Does anyone have a child that is trached only because of secretions? > Jack's secretions tend to be primarily in his nose. The doctors (who spend > less than 10 min. a month with him) are convinced that they are in his > throat but when I suction I don't get hardly anything down there. And when > he closes his mouth and breathes out of his nose it is so clear that the > issue is with his nose. The doctors, especially the pulmonologist who has > only seen him once, have started mentioning a trach but I don't feel like > this would help with nasal secretions. He is still going to produce the snot > whether he is trached or not. Jack does not have issues with oxygenation and > is not currently on oxygen. Sometimes I do have trouble getting the > secretions out of his nose but it doesn't seem to bother him. Right now we > use a Neotech " Little Sucker " . We also use saline to break up the mucus. > Does anyone use catheters in the nose or have another suggestion for a > suction tip? > > I just don't want these surgery hungry doctors doing a trach for the heck > of it. You better believe I won't let that happen! > > What types of procedures have helped reduce the amount of nasal > secretions? I know I've read that a T&A has helped. Anything else? > > Thanks! > > ~ > Mom of Jack (7mo. CHARGEr) > > ____________ _________ _________ _________ _________ __ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 , Vinny's secretions were awful due to his choanal atresia. But I was dead against a trach (so was our ENT) unless he absolutely needed it to survive. Fortunately, he is now 22 months and discussions of a trach are long over. He still has secretions like crazy though. He is getting much better about trying to blow them out. Before that, we used a suction machine about every 10 minutes. The catheters were helpful, but what we found MOST helpful was a nasal aspirator cut in half (leaving the pointy part and half of the rounded bulb) and a connector. The connector is pushed inside the open half of the bulb and is then attached to the tubing that attaches to the suction machine. IF you need more info, feel free to email me and I can send a picture. ina, mom to Luca (3.5) & Vinny (22 months w/ cHARgE) --- Keedy wkeedy@...> wrote: > That certainly makes sense, to have clear-cut > reasons and documentation of the necessity. I hope > you are able to access the information you need to > participate in this important decision. > > And it's definitely not unheard of to get second > opinions if you are not satisfied with information > that is being presented to you. > > Very best to you and Jack, > > > Mom to Kendra, Camille and > > trach > > > > > > Does anyone have a child that is trached only > because of secretions? > > > Jack's secretions tend to be primarily in his > nose. The doctors (who spend > > > less than 10 min. a month with him) are > convinced that they are in his > > > throat but when I suction I don't get hardly > anything down there. And when > > > he closes his mouth and breathes out of his nose > it is so clear that the > > > issue is with his nose. The doctors, especially > the pulmonologist who has > > > only seen him once, have started mentioning a > trach but I don't feel like > > > this would help with nasal secretions. He is > still going to produce the snot > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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