JaydasWorriedMama
05-24-2008, 01:42 AM
hi all! im new to the boards, my name is Jessica, i am 22 years old and a single mommy to a beautiful baby girl named Jayda. forgive me if im posting this to the wrong board, ive never been good at these things. ive never talked to anyone who could possibly understand a fraction of what Jayda and i have gone through and i just feel like venting.. so here it goes.
my pregnancy went pretty unremarkable other than her dad split as soon as he found out i was pregnant, and the fact that i was GBS positive when they tested me in my 38th week. (for those who might not know, GBS is something over 80% of women have when they are pregnant, it is not serious but they must receive two rounds of antibiotics while in labor before their water breaks) my due date was jan. 6th, 2007 and i was almost 2 weeks overdue when i went into labor. i was in labor for 72 straight hours with hard, nonstop contractions but only dilated to 3 cm and at my hospital, you had to be 4 before they would admit you. i went to the hospital 4 times in those 3 days only to receive shots of morphine and be sent home. the last time i was sent home, about 3 hours later.. my water broke. when i got to the hospital, jayda's heartbeat was getting too high so the doctors decided to do an emergency c-section (keep in mind that i did not receive the antibiotics i needed) when jayda was born, she wasnt breathing (her one minute apgar was a one) and non responsive because she ingested the infection from my uterus (that antibiotics COULD have prevented possibly) and they had to intubate her which did bring her back (her 5 minute apgar was 7). she was immediately admitted to the NICU. upon admission to the NICU (approximately 30 minutes after birth), she was accidentally extubated (which i took as meaning they accidentally ripped it out) and she was breathing fine so they left it out. the doctors told me she should be fine, and had her on antibiotics for 7 days. well, a couple days into the NICU, they attempted feeding jayda. the nurse noticed a struggle to breathe and coughing while she ate so the doctors ordered an upper gi as well as a modified barium swallow test. the modified showed severe aspiration of formula when she would swallow. ENT also suspected vocal cord paralysis. so they scheduled jayda for gtube placement and a bronch to find out what was going on. feb of 2007, jayda got her gtube and ENT diagnosed her with laryngomalacia and ruled out the vocal cord paralysis.
i brought jayda home a few weeks later and right away i knew something was wrong because everytime she would eat, she would throw up over 75% of what she took (from her nose, mouth, projectile). i took her to doctor after doctor and finally after being referred for the millionth time, the gi said she was failure to thrive and also had pneumonia. (she was 7 lbs. 3 oz. at birth and at that time was only 8 lbs., 9 oz. at 4 months old) i also suspect that the pneumonia was due to her constantly throwing up all day and the stomach acid and formula being aspirated. anyway, a nissen fundoplication was then performed and the pulmonologist started pushing me to get getting a trach. i was not convinced she needed it so i said no and we went home from the hospital.
jayda got better immediately and started growing like a weed. this was in may. we had no problems and she was doing fine. at the beginning of october, jayda had a salivagram ordered by the ENT. around this time she also got an ear infection and was put on antibiotics. her stomach is really sensitive to antibiotics and she got c-difficile virus and had to be hospitalized because of dehydration. in that week she was in the hospital, the attending doctor told me she saw the results of the salivagram and it showed jayda to be aspirating her own secretions. the doctor said she then saw that both ENT and Pulmonology had recommended the tracheotomy and that i had refused. she told me that the situation was serious enough that if i didnt agree and consent to the surgery, she would get DCS involved. i was and still am really confused at this. jayda has had zero respiratory issues other than at birth and the pneumonia in may. she has never struggled to breathe, as i have read was on of the comforting things to you trach moms.. that it allowed your child to breathe easily. her laryngomalacia has never been bad enough i guess that her airways ever collapsed, it mainly just caused severe stridor. i understand that she was aspirating her saliva, but if it wasnt causing her pneumonia, why is that a huge issue? so i consented for the surgery and on october 17th, 2007.. jayda was trached. oh and i forgot to mention, when she had a follow up modified in july 2007, she was still aspirating the thin liquids but not thickened or honey consistency liquids.
now ive learned to deal with everything that has been thrown at us but now i just feel like these doctors have given her a trach and thats it, left me in the dark. her ENT doctor does not have good bedside manner, he barely listens to me when i talk and acts like im an idiot and is in a hurry when i ask questions. i dont know of other options for a different doctor since jayda is on tenncare (state medicaid). we just had another modified and she is STILL aspirating the thin liquids. i know laryngomalacia is supposed to get better by 18 months but she was 15 months at the time of the test and im starting to lose hope. the ENT had ordered the modified to see about getting her trach out but now i know hes going to say no she wont get it out and i just dont know what to do. i want a plan of action, i want to know options, i want to know if there is other problems that they are not seeing. she is a VERY bright little girl, with NO delays in development except for the language and speech. actually in alot of areas, she is beyond her age in development, so im not too worried about neurological problems. the last speech therapist that did her modified did say she had weakened muscles and decrease sensation in her throat that caused her aspiration (which makes me think maybe its a problem from possibly her throat being damaged from the traumatic intubation at birth). her PCP talks to me but basically leaves anything concerning the trach and feeding tube up to the ENT.
i know this was alot to read but if any of you have any words of encouragement or advice, i would REALLY appreciate them. i cant find anyone that has even had close to the same situation because most of the kids who are trached with laryngomalacia also have other diagnosis' or had problems with their airway collapsing and not being able to breathe.. but i dont hear too much about laryngomalacia kids also having dysphagia. thanks to anyone who even gets through reading this. lol, i dont know if ill have any replies but it sure felt better to get it off my chest. and me being young and a single mom, i dont have a place like this just to put my thoughts on her exact situation on.
my pregnancy went pretty unremarkable other than her dad split as soon as he found out i was pregnant, and the fact that i was GBS positive when they tested me in my 38th week. (for those who might not know, GBS is something over 80% of women have when they are pregnant, it is not serious but they must receive two rounds of antibiotics while in labor before their water breaks) my due date was jan. 6th, 2007 and i was almost 2 weeks overdue when i went into labor. i was in labor for 72 straight hours with hard, nonstop contractions but only dilated to 3 cm and at my hospital, you had to be 4 before they would admit you. i went to the hospital 4 times in those 3 days only to receive shots of morphine and be sent home. the last time i was sent home, about 3 hours later.. my water broke. when i got to the hospital, jayda's heartbeat was getting too high so the doctors decided to do an emergency c-section (keep in mind that i did not receive the antibiotics i needed) when jayda was born, she wasnt breathing (her one minute apgar was a one) and non responsive because she ingested the infection from my uterus (that antibiotics COULD have prevented possibly) and they had to intubate her which did bring her back (her 5 minute apgar was 7). she was immediately admitted to the NICU. upon admission to the NICU (approximately 30 minutes after birth), she was accidentally extubated (which i took as meaning they accidentally ripped it out) and she was breathing fine so they left it out. the doctors told me she should be fine, and had her on antibiotics for 7 days. well, a couple days into the NICU, they attempted feeding jayda. the nurse noticed a struggle to breathe and coughing while she ate so the doctors ordered an upper gi as well as a modified barium swallow test. the modified showed severe aspiration of formula when she would swallow. ENT also suspected vocal cord paralysis. so they scheduled jayda for gtube placement and a bronch to find out what was going on. feb of 2007, jayda got her gtube and ENT diagnosed her with laryngomalacia and ruled out the vocal cord paralysis.
i brought jayda home a few weeks later and right away i knew something was wrong because everytime she would eat, she would throw up over 75% of what she took (from her nose, mouth, projectile). i took her to doctor after doctor and finally after being referred for the millionth time, the gi said she was failure to thrive and also had pneumonia. (she was 7 lbs. 3 oz. at birth and at that time was only 8 lbs., 9 oz. at 4 months old) i also suspect that the pneumonia was due to her constantly throwing up all day and the stomach acid and formula being aspirated. anyway, a nissen fundoplication was then performed and the pulmonologist started pushing me to get getting a trach. i was not convinced she needed it so i said no and we went home from the hospital.
jayda got better immediately and started growing like a weed. this was in may. we had no problems and she was doing fine. at the beginning of october, jayda had a salivagram ordered by the ENT. around this time she also got an ear infection and was put on antibiotics. her stomach is really sensitive to antibiotics and she got c-difficile virus and had to be hospitalized because of dehydration. in that week she was in the hospital, the attending doctor told me she saw the results of the salivagram and it showed jayda to be aspirating her own secretions. the doctor said she then saw that both ENT and Pulmonology had recommended the tracheotomy and that i had refused. she told me that the situation was serious enough that if i didnt agree and consent to the surgery, she would get DCS involved. i was and still am really confused at this. jayda has had zero respiratory issues other than at birth and the pneumonia in may. she has never struggled to breathe, as i have read was on of the comforting things to you trach moms.. that it allowed your child to breathe easily. her laryngomalacia has never been bad enough i guess that her airways ever collapsed, it mainly just caused severe stridor. i understand that she was aspirating her saliva, but if it wasnt causing her pneumonia, why is that a huge issue? so i consented for the surgery and on october 17th, 2007.. jayda was trached. oh and i forgot to mention, when she had a follow up modified in july 2007, she was still aspirating the thin liquids but not thickened or honey consistency liquids.
now ive learned to deal with everything that has been thrown at us but now i just feel like these doctors have given her a trach and thats it, left me in the dark. her ENT doctor does not have good bedside manner, he barely listens to me when i talk and acts like im an idiot and is in a hurry when i ask questions. i dont know of other options for a different doctor since jayda is on tenncare (state medicaid). we just had another modified and she is STILL aspirating the thin liquids. i know laryngomalacia is supposed to get better by 18 months but she was 15 months at the time of the test and im starting to lose hope. the ENT had ordered the modified to see about getting her trach out but now i know hes going to say no she wont get it out and i just dont know what to do. i want a plan of action, i want to know options, i want to know if there is other problems that they are not seeing. she is a VERY bright little girl, with NO delays in development except for the language and speech. actually in alot of areas, she is beyond her age in development, so im not too worried about neurological problems. the last speech therapist that did her modified did say she had weakened muscles and decrease sensation in her throat that caused her aspiration (which makes me think maybe its a problem from possibly her throat being damaged from the traumatic intubation at birth). her PCP talks to me but basically leaves anything concerning the trach and feeding tube up to the ENT.
i know this was alot to read but if any of you have any words of encouragement or advice, i would REALLY appreciate them. i cant find anyone that has even had close to the same situation because most of the kids who are trached with laryngomalacia also have other diagnosis' or had problems with their airway collapsing and not being able to breathe.. but i dont hear too much about laryngomalacia kids also having dysphagia. thanks to anyone who even gets through reading this. lol, i dont know if ill have any replies but it sure felt better to get it off my chest. and me being young and a single mom, i dont have a place like this just to put my thoughts on her exact situation on.