Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Tim, I am the grandmother of 4 month old Austin who could come home if we could find night nurses because of his trach. My son's insurance company cannot provide this service with the agencies they have contracted and will not go out of network to find home nurse care. He is fighting with insurance and is talking to state government to get resolved, but I am wondering if you or anyone else has experience with what to do at night with a child who has a trach. As an infant who cannot make sounds I do understand the need for someone to be with him around the clock, but with proper training does it really need to be a pedriatric nurse. Any suggestions to get him home sooner rather than later. None of us understand why an insurance company would want to pay a hospital for 24 hour care verses home care of 8 hours per day, but I think insurance companies just test you to see if will go away and resolve it with your own resources. By the way even with all of his medical problems and hearing/sight issues, he is thriving and will only do better when he is home. Debbie > >Reply-To: CHARGEonelist >To: CHARGEonelist >Subject: School Stuff >Date: Fri, 11 Feb 2000 14:13:30 -0600 > > > >Hey everyone, > >'s Developmental Pediatrician called me today to see if I would >talk to a Mom who's son is a patient of hers about school placement. >Some of you remember the struggle we had getting into the Regional >Day School for the Deaf when she was three. Blind children (especially >those with other medical problems) are not usually placed in Deaf Ed they >are placed in Special Ed. We proved that was cognitively able to >learn and needed total communication to further her education and social >skills. only has a mild hearing loss but is unable to speak >because of her trach, therefore, sign language is her language~the way >she communicates. So she was able to attend the deaf ed preschool along >with an intervener. > >Anyway, I'd like to ask those of you who have dealt with the schools >quite a bit and know the language, the laws, and the unspoken rules to >give me your opinion. > >Adam is almost 5 and is being considered for kindergarten placement. He >has a severe motor problem which includes some facial paralysis among >other things. Anyway, he has no hearing loss and understands what is >spoken to him. He has no vision loss. But he cannot speak. He uses >sign language to communicate. He has been in a special ed preschool for >the last two years and the school wants to place him in a regular >kindergarten class because his test scores are high and he is very smart. > His sign language vocabulary is quite large (about 300 signs) which he >learned from his private therapies. The special ed classes just use >basic signs (more, eat, stop) but no sentences. The special ed teachers >cannot understand most of his signs so in school he just uses the cue >signs that are used in the classroom. Because Adam does not have a >hearing impairment the school will not provide an interpreter so that he >can communicate with the teacher. The school thinks there is no problem >because Adam does his work and sits quietly all day~no behavioral >problems. I say that there is a problem when a 4 year old sits quietly >all day and doesn't talk to anyone because no one understands his >language. The Mom is looking into trying to get him into their Regional >Day School for the Deaf because he needs total communication and >socialization in his language but he doesn't " qualify " . > >I intend to help this Mom advocate for her son but would like as much >advice as possible before sending her in to talk with the schools again. >By the way she called an advocacy agency who said they were dealing with >access issues right now and couldn't help her. > >Thank you for any and all comments, ideas, and advise. > > >Mesquite, TX >________________________________________________________________ >YOU'RE PAYING TOO MUCH FOR THE INTERNET! >Juno now offers FREE Internet Access! >Try it today - there's no risk! For your FREE software, visit: >http://dl.www.juno.com/get/tagj. > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 Debbie, My son, , 15, came home with a trach at 3 1/2 weeks old. I was terrified. Back then a pediatric nurse for private needs was only for extremely critical children. We brought home and took him into his own room. It looked like a neonatal intensive care, but it was his room. It was located across the hall from ours, about fourteen steps. I felt that if I ever put 's bed in our room I might never take it out. I prayed constantly. I asked the Lord to always make sure I would hear if he needed me. He, like Austin, made no voice sounds. His cries were just loud breathing noises. Same as his laughs. I already had a daughter, Debbie, who was five years old. She was perfectly healthy and I was used to " baby sounds " . But you know, from that first night, my " mother ears " were tuned to 's special noises. I slept lightly that first week. I checked on him too many times to count. And he was always content and quiet. Or crying like a normal infant, but silently. Three times he suffered febrile seizures. One of those he quit breathing and an amulance was called. Each time I heard him just in time. Each time I believe God woke me up or called me from another room to check on . I trusted God to help me take care of . I felt that was God's child, His responsibility, and if I did the best I could do, and trusted Him to alert me to 's needs, would live to toddlerhood and then childhood and maybe even adulthood. So much stress was taken from me by remembering, constantly, that was not my child, but God's. That foremost thought has carried me through 's life. And I believe that is not demanding or selfish because I was able to treat him as normally as I could, as he could be treated. It was a tremendous effort not to put in my bedroom the first night. It was a tremendous effort to not monitor him constantly. But now, with those baby monitors that are so sound-sensitive, I would think that when Austin is brought home, he will be fine. His mom will grow to listen for his special sounds and come running only when she needs to. The trach care is overwhelming at first, but gradually is very routine. I was amazed when was three months and then six months, etc, how much easier his care became. Many scares with his health, many surgeries and therapies and disappointments and illnessness. But many more blessings and joys and much laughter. is the best thing that has every happend to me. I wish you the best with Austin and hope that when he comes home, if there is no nurse, that you all can find the peace that we did with . Croskey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2000 Report Share Posted February 11, 2000 I agree with you. The parents and us grandmothers have all been taught to take care of the trach. But the hospital won't discharge him without nurses?! Debbie > >Reply-To: CHARGEonelist >To: <CHARGEonelist> >Subject: Re: trach >Date: Fri, 11 Feb 2000 20:49:31 -0500 > > > >Debbie, > My daughter came home with a trach at 4 mths old. No nursing care is >needed if the hospital nursing staff has taught the parents what to do. >Taking care of the trach was very easy. The sounds were different but you >learned really quick what sound was what. I never had a nurse and Brittney >is now 7 1/2 yrs old. I was a single mom as well. I'm now 28. I was 20 when >I had her. >Best of Luck, >Amy mom to Brittney 7 CHARgE, 5, 3 > > > School Stuff > > >Date: Fri, 11 Feb 2000 14:13:30 -0600 > > > > > > > > > > > >Hey everyone, > > > > > >'s Developmental Pediatrician called me today to see if I would > > >talk to a Mom who's son is a patient of hers about school placement. > > >Some of you remember the struggle we had getting into the >Regional > > >Day School for the Deaf when she was three. Blind children (especially > > >those with other medical problems) are not usually placed in Deaf Ed >they > > >are placed in Special Ed. We proved that was cognitively able >to > > >learn and needed total communication to further her education and >social > > >skills. only has a mild hearing loss but is unable to speak > > >because of her trach, therefore, sign language is her language~the way > > >she communicates. So she was able to attend the deaf ed preschool >along > > >with an intervener. > > > > > >Anyway, I'd like to ask those of you who have dealt with the schools > > >quite a bit and know the language, the laws, and the unspoken rules to > > >give me your opinion. > > > > > >Adam is almost 5 and is being considered for kindergarten placement. >He > > >has a severe motor problem which includes some facial paralysis among > > >other things. Anyway, he has no hearing loss and understands what is > > >spoken to him. He has no vision loss. But he cannot speak. He uses > > >sign language to communicate. He has been in a special ed preschool >for > > >the last two years and the school wants to place him in a regular > > >kindergarten class because his test scores are high and he is very >smart. > > > His sign language vocabulary is quite large (about 300 signs) which >he > > >learned from his private therapies. The special ed classes just use > > >basic signs (more, eat, stop) but no sentences. The special ed >teachers > > >cannot understand most of his signs so in school he just uses the cue > > >signs that are used in the classroom. Because Adam does not have a > > >hearing impairment the school will not provide an interpreter so that >he > > >can communicate with the teacher. The school thinks there is no >problem > > >because Adam does his work and sits quietly all day~no behavioral > > >problems. I say that there is a problem when a 4 year old sits quietly > > >all day and doesn't talk to anyone because no one understands his > > >language. The Mom is looking into trying to get him into their >Regional > > >Day School for the Deaf because he needs total communication and > > >socialization in his language but he doesn't " qualify " . > > > > > >I intend to help this Mom advocate for her son but would like as much > > >advice as possible before sending her in to talk with the schools >again. > > >By the way she called an advocacy agency who said they were dealing >with > > >access issues right now and couldn't help her. > > > > > >Thank you for any and all comments, ideas, and advise. > > > > > > > > >Mesquite, TX > > >________________________________________________________________ > > >YOU'RE PAYING TOO MUCH FOR THE INTERNET! > > >Juno now offers FREE Internet Access! > > >Try it today - there's no risk! For your FREE software, visit: > > >http://dl.www.juno.com/get/tagj. > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Debbie, My daughter came home with a trach at 4 mths old. No nursing care is needed if the hospital nursing staff has taught the parents what to do. Taking care of the trach was very easy. The sounds were different but you learned really quick what sound was what. I never had a nurse and Brittney is now 7 1/2 yrs old. I was a single mom as well. I'm now 28. I was 20 when I had her. Best of Luck, Amy mom to Brittney 7 CHARgE, 5, 3 School Stuff > >Date: Fri, 11 Feb 2000 14:13:30 -0600 > > > > > > > >Hey everyone, > > > >'s Developmental Pediatrician called me today to see if I would > >talk to a Mom who's son is a patient of hers about school placement. > >Some of you remember the struggle we had getting into the Regional > >Day School for the Deaf when she was three. Blind children (especially > >those with other medical problems) are not usually placed in Deaf Ed they > >are placed in Special Ed. We proved that was cognitively able to > >learn and needed total communication to further her education and social > >skills. only has a mild hearing loss but is unable to speak > >because of her trach, therefore, sign language is her language~the way > >she communicates. So she was able to attend the deaf ed preschool along > >with an intervener. > > > >Anyway, I'd like to ask those of you who have dealt with the schools > >quite a bit and know the language, the laws, and the unspoken rules to > >give me your opinion. > > > >Adam is almost 5 and is being considered for kindergarten placement. He > >has a severe motor problem which includes some facial paralysis among > >other things. Anyway, he has no hearing loss and understands what is > >spoken to him. He has no vision loss. But he cannot speak. He uses > >sign language to communicate. He has been in a special ed preschool for > >the last two years and the school wants to place him in a regular > >kindergarten class because his test scores are high and he is very smart. > > His sign language vocabulary is quite large (about 300 signs) which he > >learned from his private therapies. The special ed classes just use > >basic signs (more, eat, stop) but no sentences. The special ed teachers > >cannot understand most of his signs so in school he just uses the cue > >signs that are used in the classroom. Because Adam does not have a > >hearing impairment the school will not provide an interpreter so that he > >can communicate with the teacher. The school thinks there is no problem > >because Adam does his work and sits quietly all day~no behavioral > >problems. I say that there is a problem when a 4 year old sits quietly > >all day and doesn't talk to anyone because no one understands his > >language. The Mom is looking into trying to get him into their Regional > >Day School for the Deaf because he needs total communication and > >socialization in his language but he doesn't " qualify " . > > > >I intend to help this Mom advocate for her son but would like as much > >advice as possible before sending her in to talk with the schools again. > >By the way she called an advocacy agency who said they were dealing with > >access issues right now and couldn't help her. > > > >Thank you for any and all comments, ideas, and advise. > > > > > >Mesquite, TX > >________________________________________________________________ > >YOU'RE PAYING TOO MUCH FOR THE INTERNET! > >Juno now offers FREE Internet Access! > >Try it today - there's no risk! For your FREE software, visit: > >http://dl.www.juno.com/get/tagj. > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 When our son was discharged at 9 weeks of age 10 years ago, the hospital wouldn't let him go home without a completed schedule of several weeks of 24 hour nursing. This was in contrast to our insurance who thought that feeding with a g tube was EASIER than traditional feeding and hence weighed out the additional work of a trach. I agree that it is not difficult to care for a trached child. But I will say that it was in our case very very time intensive, and there were often times we really couldn't let him out of our sight. But our son had reflux, a poor swallow, which didn't manage any of his own secretions at the time,. and then two years of fairly constant upper repisratory infections (aspirations?). We also had adopted a very time intensive feeding schedule, of small quantities frequently, which had to be given slowly so as to minimize the reflux, but we chose to do rather than pump feed . We were fairly soon weaned to 12 hour, then 8 hour nursing, and then only a few nights a week. But it was a blessing to have the extra hands and eyes to care for him so we could get some sleep. Oh yes, and it definitely gets so much better with time. the best of luck to you. yuka persico Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Debbie, Is the problem for the insurance company that they can't provide RNs or is the problem they can not provide any nighttime service (such as LPNs) at all? Our daughter came home from the hospital at about 8 weeks of age with a trach and g-tube. We had 24 hour care for several months and then started to wean down. Ultimately we were served by LPNs not RNs and that saved the insurance company a lot of money. The LPNs were specially trained for trach care and also worked with ventilator patients. I've just read that several CHARGE families with trachs had no nursing care and did wonderfully well. My hat is truly off to you!!! You did beautifully and amazingly well in a difficult situation. In our case that was not a possibility unfortunately. Our daughter's trach was very unstable. In her first month or two she was 'clinically dead' in the hospital at least twice as the tracheostomy tube completely blocked her airway. We would not have taken her home without nursing care in the beginning. Tracheostomies are life-savers. There is absolutely no doubt about that. Sometimes they are very 'routine' and sometimes not. I just wanted to let you know how important nursing care was to us. I agree with you that when the children are able to be home it is MUCH better for them emotionally and developmentally. Mom to Kendra, 13, CHARGE, , 19 and Camille, 21 Portland, OR Debbie Mays wrote: > > > Tim, > I am the grandmother of 4 month old Austin who could come home if we could > find night nurses because of his trach. My son's insurance company cannot > provide this service with the agencies they have contracted and will not go > out of network to find home nurse care. He is fighting with insurance and > is talking to state government to get resolved, but I am wondering if you or > anyone else has experience with what to do at night with a child who has a > trach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 , I think the problem is providing any pedriatric nurses because most of the agencies are in land and my son's family lives over the state line in PA. Therefore, the nurses would need a PA license. So it is making matters that much more difficult. Debbie > >Reply-To: CHARGEonelist >To: CHARGEonelist >Subject: Re: trach >Date: Sat, 12 Feb 2000 03:51:33 -0800 > > > >Debbie, > >Is the problem for the insurance company that they can't provide RNs >or is the problem they can not provide any nighttime service (such as >LPNs) at all? > >Our daughter came home from the hospital at about 8 weeks of age >with a trach and g-tube. We had 24 hour care for several months and >then started to wean down. Ultimately we were served by LPNs not >RNs and that saved the insurance company a lot of money. The LPNs >were specially trained for trach care and also worked with ventilator >patients. > > I've just read that several CHARGE families with trachs had no nursing >care and did wonderfully well. My hat is truly off to you!!! You did >beautifully >and amazingly well in a difficult situation. > >In our case that was not a possibility unfortunately. Our daughter's trach >was very unstable. In her first month or two she was 'clinically dead' in >the hospital at least twice as the tracheostomy tube completely blocked her >airway. We would not have taken her home >without nursing care in the >beginning. > >Tracheostomies are life-savers. There is absolutely no doubt about that. >Sometimes they are very 'routine' and >sometimes not. I just wanted to >let you know how important nursing care was to us. I agree with you that >when the children are able to be home it is MUCH better for them >emotionally >and developmentally. > > >Mom to Kendra, 13, CHARGE, , 19 and Camille, 21 >Portland, OR > >Debbie Mays wrote: > > > > > > > Tim, > > I am the grandmother of 4 month old Austin who could come home if we >could > > find night nurses because of his trach. My son's insurance company >cannot > > provide this service with the agencies they have contracted and will not >go > > out of network to find home nurse care. He is fighting with insurance >and > > is talking to state government to get resolved, but I am wondering if >you or > > anyone else has experience with what to do at night with a child who has >a > > trach. > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 Cathie Caitlyn is 4 1/2yrs old and though she does not have choanal atresia nor a trach she is a mouth breather. This is probably due to too much mucus in her nose. We are currently giving her Flovent to try to clear that up--her pulmonary dr is always bringing up why she seems to always have chronic sinusitis but he never does anything about it. Only long term antibiotics seem to work for her and he never wants to put out the effort. The mouth breathing bothers me because she's always drooling and her lips are always cracked but those are minor compared to a trach. I too was a mouth breather as a child due to chronic sinusitis about 9 months of each year til I was an adult. You end up needing braces, but again, a pretty minor concern compared to the needs of a trach. I would push the drs as to why at this age (she's no longer an infant) she needs to be a nose breather. Maybe they can try to wean her from it and see how she does. jeanne __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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