Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Hi e, It's good to hear that Logan is coming home. I have a couple of things to suggest. >>> The tubing is so heavy that I'm afraid when I pick him up or move him that he will decanulate himself. <<< My daughter's tubing was lighter-just a nebulizer tube, but I had a velco belt that I think came from some piece of equipment. So, I belted the tube to her so it rolled when she rolled. >>>He was alarming like mad<<< Once he's home and settled, and you get used to how he is at any point, you may be able to dial down the alarm settings. >>>Also the hospital had promised us some sort of nursing but our insurance requires 50% copay....yeah right....who the heck can afford that.<<< Nobody. There are ways, and others have gone thru this more recently, and can say better, but there are waivers available in the state for children at home who would, without sufficient care, have to be hospitalized long-term. That gets you the money. Also, contact the Dept. of Mental/and-or Disabilities in your state, and the Deaf/blind commission. They will know the ins and outs of extra nursing coverage. Lastly, you can fight the insurance company, if it comes to that. Do not give a second thought about " labels " at this point. It has no negative impact, and can help you immensely. >>>I'm concerned about how he will be viewed and treated by others or if there is anything I can do to make his life more fruitful<<< Speaking as an " Old Mom " , the best thing you can do right now is handle what's coming home. There will be a lot of follow-up doctor's appointments, and much in-home therapy. Beyond medical management, the therapies will be the most crucial contribution over the next 2 years. The best thing I learned from 's nurses, was make sure that the child is happy each day, even though we were doing unusual things, like gtube and trach changes, equipment and people all over, not much sleep, moments of varying stress, that the baby got to be a baby. No matter what we were doing, we tried to interject something pleasant for her at the same time. And to give special, special on-going attention to Shane. The doctors, therapists, and Logan will lead you to the right steps at the right time, leading all to the best possible outcome. The first years are so " interesting " that being " in the moment " IS the best thing you can do for the future. ;-) >>>I can't wait to hold him for as long as I want.<<< Ahhh, the glorious payoff! ;-) in Ma. (, 21 yrs) ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 dear brandie and logan, congratulations on his discharge from the hospital... i know youre scared, but you were meant for the job of being logan's mother. you have joined our club. you are a mother of a special needs child now and we are here for you. i wish i could give you some instructions or whatever that could help, but the best thing is to take it day to day. ask for help when you need it, a hug when you need it... cry when you want to. take time for yourself, i know that we all remind each other of this one-but it is important. write when you want to. get a nap every now and then. snuggle logan all the time. encourage your son shane to become involved with his little baby brother's medical treatments. trust yourself. im here for you and this listserv is a great place to call home. chrystal mother to arleigh-4 chrystine-16 months CHaRGE+chronic kidney disease and silas-5 months old nathans wife ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Logan is due to be discharged March 20th and I am soooo nervous. My husband and I just finished our 8 hour (individual) shifts and will have our 24 hour shifts Saturday and Sunday. I don't know if all hospitals require parent's to do that before discharge but Riley had us go through a whole slew of equipment/med/trach training. I must say I was a bit overwhelmed at the beginning of my shift. He was alarming like mad and the nurses kept popping in like I had no idea what was going on......I just wanted to scream, " I have it under control. " I hope it gets a little easier when he gets home. My main concern is the trach and having him hooked up to the CPAP machine. The tubing is so heavy that I'm afraid when I pick him up or move him that he will decanulate himself. But I can't let that stop me for crying out loud. He didn't get any of the love or attention he deserved the first three months of his life. I can't wait to hold him for as long as I want. I was asked in a previous e-mail what the extent of his syndrome is: He has had two laryngoscopies (left and right side in two separate surgeries), malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't have reflux and a tracheostomy. He tracks with his eyes a little but we don't know to what extent he can see, the same for his hearing, they believe he can hear but don't know to what extent. He has facial palsy so he has no facial expressions, no ear lobes, and micropenis as well as very low muscle tone. He does have tetralogy of Fallot and will need heart surgery at nine months. He stays fisted most of the time but wears splints for three hour periods during the day and at night. He is very " juicy " as we have termed it. His secretions are in abundance. He's also a porker. He's almost 12 lbs?! But of course that's to the 24 cal formula they have him on. He takes way too many medications. Two for calcium, two for the secretions to try and minimize them, two diuretics to keep water off his lungs and kidneys, valium, a muscle relaxant, a multivitamin and one for iron. It seems we're going to have to rent out a pharmacy just for him. Also the hospital had promised us some sort of nursing but our insurance requires 50% copay....yeah right....who the heck can afford that. It seems being middle class is a curse. You're danged if you do and danged if you don't. I do have a question for the adults with Charge.....is there anything that you wish could have been done differently when you were being raised in regards to schooling, parenting, etc. Call me crazy but even though Logan is three months, I'm concerned about how he will be viewed and treated by others or if there is anything I can do to make his life more fruitful so he doesn't feel he is any different than anyone else. Blessings to you all. Any suggestions?!? Happy St. 's Day, e mom of Shane 4, Logan 3 Months (CHaRGE) This e-mail may contain data that is confidential, proprietary or non-public personal information, as that term is defined in the Gramm-Leach-Bliley Act (collectively, Confidential Information). The Confidential Information is disclosed conditioned upon your agreement that you will treat it confidentially and in accordance with applicable law, ensure that such data isn't used or disclosed except for the limited purpose for which it's being provided and will notify and cooperate with us regarding any requested or unauthorized disclosure or use of any Confidential Information. By accepting and reviewing the Confidential information, you agree to indemnify us against any losses or expenses, including attorney's fees that we may incur as a result of any unauthorized use or disclosure of this data due to your acts or omissions. If a party other than the intended recipient receives this e-mail, he or she is requested to instantly notify us of the erroneous delivery and return to us all data so delivered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Thats kinda a tough question. what would we adults have liked done differently. Erm quick responce everything and nothing. Each family is differnt. Each child is different. Maby the best thing was having early intervention programs and PT and OT. I dont know really what elce I can say. Sure there is lots I wish was different, but what kind of person would I be had I not experienced life the way I did. Im learning to be happy with who I am. I wouldnt be who I am if my life had been different. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 e, Wish I could help some but we were one of the lucky ones.. only came home on 8 meds and an ng tube (which we never used once home) course meds every two hrs for months was a pain in the arse concidering he had to be bottle fed due to the cleft and would only tolerate breast milk (can't remember how many times I fell asleep pumping LOL). Do have a couple suggestions tho.. Have you checked into SSI ? I know that they will probably will tell you no to begin with but keep trying.. you may not be able to receive any money (but man that would help huh ?) but be able to get the medicaid which will pay for nursing. Another thing we have here in CA is CCS (CA Childrens Services) that can help some no matter what the income (heck we ALWAYS hit that one) if the cost of a Drs recomendation excedes a certain percentage of your net income. I'm sure there are folks on here from your state that can help Casey Mom to the gang ________________________________________________________________________________\ ____ Food fight? Enjoy some healthy debate in the Yahoo! Answers Food & Drink Q & A. http://answers.yahoo.com/dir/?link=list & sid=396545367 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 Congratulations e- came home from the NICU after nine weeks on November 30th seventeen years ago with a trach, g-tube, very bad reflux/vomiting, and much equipment. It was like music to my ears to hear the monitors alarm in my own home, in the room that waited for him since we were a few months pregnant with him. Ever since, the light of early December mornings still makes me unreasonably happy, joyous and optimistic. hmmm... advice? One day at a time, trust yourself, trust your gut and be as unreasonably nice to yourself as possible. I held 23/7 in the unit (save for shift change....) and I think I didn't really put him down until he was three - and only then because he went to special day class pre-school. If I wasn't actively holding him, or caring for him, or manipulating him in therapy, he was on my lap and I was his chair....... - in spite of all the medical frailty of the time, I do miss it so much.... Enjoy going home! yuka >>>I can't wait to hold him for as long as I want.<<< . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 also brandie, i forgot to mention this in my earlier email and chantelle remembered-are there early intervention programs in your state? ours is called Birth to Three. They are WONDERFUL!!! chrystine's occupational therapist, physical therapist, developmental specialist, and her nurses just come to our home and its FREE! at least until she is 3 years old. they recently paid for her AFO's (ankle foot orthotics). chrystal chrystine 16 months CHaRGE ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Wwo, de ja vu! I went through most of the same thing as a child, but over a long period of time. I think a counselor will be handy. The counselor will be kind of a " matchmaker " and select kids who they think will be compatible. Sure, it is really hard in elementary but in fact, it is easy! When I met a girl in my high school in October, we started off as aquainances. By November, friends. Really good friends by December, January. See? She and I are PERFECT and have no issues. I also think the teachers could try to encourage kids to talk to him. No one encouraged kids to talk to me. Sure, it is my responsibility, but kids were scared of me in a way. Also, I had health aids and I was in critical health conditions. Now, I am perfectly fine, except for my toes that keep compromising my BALANCE!!!!!! It isn't that bad now. Other than Simi Elementary, who DROPPED me as a child and took me apart in the IEP!!!!! (Focusing on the Medically Challenged, the Deaf Kid, and the Short Guy) life is good. I think maybe some socail intergration would have been good, especially in preschool or kindegarten. Learning how to socialize with hormone filled 6th graders and middle schoolers starting puberty isn't good! Well, that's all for now! P.S. I am honored to be a speaker at the CHARGE conference, even though I will be 3 months away from adulthood by then, lol Hospital Discharge Logan is due to be discharged March 20th and I am soooo nervous. My husband and I just finished our 8 hour (individual) shifts and will have our 24 hour shifts Saturday and Sunday. I don't know if all hospitals require parent's to do that before discharge but Riley had us go through a whole slew of equipment/med/trach training. I must say I was a bit overwhelmed at the beginning of my shift. He was alarming like mad and the nurses kept popping in like I had no idea what was going on......I just wanted to scream, " I have it under control. " I hope it gets a little easier when he gets home. My main concern is the trach and having him hooked up to the CPAP machine. The tubing is so heavy that I'm afraid when I pick him up or move him that he will decanulate himself. But I can't let that stop me for crying out loud. He didn't get any of the love or attention he deserved the first three months of his life. I can't wait to hold him for as long as I want. I was asked in a previous e-mail what the extent of his syndrome is: He has had two laryngoscopies (left and right side in two separate surgeries), malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't have reflux and a tracheostomy. He tracks with his eyes a little but we don't know to what extent he can see, the same for his hearing, they believe he can hear but don't know to what extent. He has facial palsy so he has no facial expressions, no ear lobes, and micropenis as well as very low muscle tone. He does have tetralogy of Fallot and will need heart surgery at nine months. He stays fisted most of the time but wears splints for three hour periods during the day and at night. He is very " juicy " as we have termed it. His secretions are in abundance. He's also a porker. He's almost 12 lbs?! But of course that's to the 24 cal formula they have him on. He takes way too many medications. Two for calcium, two for the secretions to try and minimize them, two diuretics to keep water off his lungs and kidneys, valium, a muscle relaxant, a multivitamin and one for iron. It seems we're going to have to rent out a pharmacy just for him. Also the hospital had promised us some sort of nursing but our insurance requires 50% copay....yeah right....who the heck can afford that. It seems being middle class is a curse. You're danged if you do and danged if you don't. I do have a question for the adults with Charge.....is there anything that you wish could have been done differently when you were being raised in regards to schooling, parenting, etc. Call me crazy but even though Logan is three months, I'm concerned about how he will be viewed and treated by others or if there is anything I can do to make his life more fruitful so he doesn't feel he is any different than anyone else. Blessings to you all. Any suggestions?!? Happy St. 's Day, e mom of Shane 4, Logan 3 Months (CHaRGE) This e-mail may contain data that is confidential, proprietary or non-public personal information, as that term is defined in the Gramm-Leach-Bliley Act (collectively, Confidential Information). The Confidential Information is disclosed conditioned upon your agreement that you will treat it confidentially and in accordance with applicable law, ensure that such data isn't used or disclosed except for the limited purpose for which it's being provided and will notify and cooperate with us regarding any requested or unauthorized disclosure or use of any Confidential Information. By accepting and reviewing the Confidential information, you agree to indemnify us against any losses or expenses, including attorney's fees that we may incur as a result of any unauthorized use or disclosure of this data due to your acts or omissions. If a party other than the intended recipient receives this e-mail, he or she is requested to instantly notify us of the erroneous delivery and return to us all data so delivered. ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.12/724 - Release Date: 3/16/07 12:12 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 e, I was just smiling so big at your statement, " I can't wait to hold him for as long as I want. " I am happy for you and bet you will figure it all out very quickly! pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Good for you, Chantelle! That is a self-empowering statement. pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 So beautiful, Yuka! When has his own family, he will have been given such a legacy from his mother. your words are...so.. so.. you! pam Hospital Discharge Logan is due to be discharged March 20th and I am soooo nervous. My husband and I just finished our 8 hour (individual) shifts and will have our 24 hour shifts Saturday and Sunday. I don't know if all hospitals require parent's to do that before discharge but Riley had us go through a whole slew of equipment/med/trach training. I must say I was a bit overwhelmed at the beginning of my shift. He was alarming like mad and the nurses kept popping in like I had no idea what was going on......I just wanted to scream, " I have it under control. " I hope it gets a little easier when he gets home. My main concern is the trach and having him hooked up to the CPAP machine. The tubing is so heavy that I'm afraid when I pick him up or move him that he will decanulate himself. But I can't let that stop me for crying out loud. He didn't get any of the love or attention he deserved the first three months of his life. I can't wait to hold him for as long as I want. I was asked in a previous e-mail what the extent of his syndrome is: He has had two laryngoscopies (left and right side in two separate surgeries), malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't have reflux and a tracheostomy. He tracks with his eyes a little but we don't know to what extent he can see, the same for his hearing, they believe he can hear but don't know to what extent. He has facial palsy so he has no facial expressions, no ear lobes, and micropenis as well as very low muscle tone. He does have tetralogy of Fallot and will need heart surgery at nine months. He stays fisted most of the time but wears splints for three hour periods during the day and at night. He is very " juicy " as we have termed it. His secretions are in abundance. He's also a porker. He's almost 12 lbs?! But of course that's to the 24 cal formula they have him on. He takes way too many medications. Two for calcium, two for the secretions to try and minimize them, two diuretics to keep water off his lungs and kidneys, valium, a muscle relaxant, a multivitamin and one for iron. It seems we're going to have to rent out a pharmacy just for him. Also the hospital had promised us some sort of nursing but our insurance requires 50% copay....yeah right....who the heck can afford that. It seems being middle class is a curse. You're danged if you do and danged if you don't. I do have a question for the adults with Charge.....is there anything that you wish could have been done differently when you were being raised in regards to schooling, parenting, etc. Call me crazy but even though Logan is three months, I'm concerned about how he will be viewed and treated by others or if there is anything I can do to make his life more fruitful so he doesn't feel he is any different than anyone else. Blessings to you all. Any suggestions?!? Happy St. 's Day, e mom of Shane 4, Logan 3 Months (CHaRGE) This e-mail may contain data that is confidential, proprietary or non-public personal information, as that term is defined in the Gramm-Leach-Bliley Act (collectively, Confidential Information). The Confidential Information is disclosed conditioned upon your agreement that you will treat it confidentially and in accordance with applicable law, ensure that such data isn't used or disclosed except for the limited purpose for which it's being provided and will notify and cooperate with us regarding any requested or unauthorized disclosure or use of any Confidential Information. By accepting and reviewing the Confidential information, you agree to indemnify us against any losses or expenses, including attorney's fees that we may incur as a result of any unauthorized use or disclosure of this data due to your acts or omissions. If a party other than the intended recipient receives this e-mail, he or she is requested to instantly notify us of the erroneous delivery and return to us all data so delivered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Great response, . pam Hospital Discharge Logan is due to be discharged March 20th and I am soooo nervous. My husband and I just finished our 8 hour (individual) shifts and will have our 24 hour shifts Saturday and Sunday. I don't know if all hospitals require parent's to do that before discharge but Riley had us go through a whole slew of equipment/med/trach training. I must say I was a bit overwhelmed at the beginning of my shift. He was alarming like mad and the nurses kept popping in like I had no idea what was going on......I just wanted to scream, " I have it under control. " I hope it gets a little easier when he gets home. My main concern is the trach and having him hooked up to the CPAP machine. The tubing is so heavy that I'm afraid when I pick him up or move him that he will decanulate himself. But I can't let that stop me for crying out loud. He didn't get any of the love or attention he deserved the first three months of his life. I can't wait to hold him for as long as I want. I was asked in a previous e-mail what the extent of his syndrome is: He has had two laryngoscopies (left and right side in two separate surgeries), malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't have reflux and a tracheostomy. He tracks with his eyes a little but we don't know to what extent he can see, the same for his hearing, they believe he can hear but don't know to what extent. He has facial palsy so he has no facial expressions, no ear lobes, and micropenis as well as very low muscle tone. He does have tetralogy of Fallot and will need heart surgery at nine months. He stays fisted most of the time but wears splints for three hour periods during the day and at night. He is very " juicy " as we have termed it. His secretions are in abundance. He's also a porker. He's almost 12 lbs?! But of course that's to the 24 cal formula they have him on. He takes way too many medications. Two for calcium, two for the secretions to try and minimize them, two diuretics to keep water off his lungs and kidneys, valium, a muscle relaxant, a multivitamin and one for iron. It seems we're going to have to rent out a pharmacy just for him. Also the hospital had promised us some sort of nursing but our insurance requires 50% copay....yeah right....who the heck can afford that. It seems being middle class is a curse. You're danged if you do and danged if you don't. I do have a question for the adults with Charge.....is there anything that you wish could have been done differently when you were being raised in regards to schooling, parenting, etc. Call me crazy but even though Logan is three months, I'm concerned about how he will be viewed and treated by others or if there is anything I can do to make his life more fruitful so he doesn't feel he is any different than anyone else. Blessings to you all. Any suggestions?!? Happy St. 's Day, e mom of Shane 4, Logan 3 Months (CHaRGE) This e-mail may contain data that is confidential, proprietary or non-public personal information, as that term is defined in the Gramm-Leach-Bliley Act (collectively, Confidential Information). The Confidential Information is disclosed conditioned upon your agreement that you will treat it confidentially and in accordance with applicable law, ensure that such data isn't used or disclosed except for the limited purpose for which it's being provided and will notify and cooperate with us regarding any requested or unauthorized disclosure or use of any Confidential Information. By accepting and reviewing the Confidential information, you agree to indemnify us against any losses or expenses, including attorney's fees that we may incur as a result of any unauthorized use or disclosure of this data due to your acts or omissions. If a party other than the intended recipient receives this e-mail, he or she is requested to instantly notify us of the erroneous delivery and return to us all data so delivered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Thank you for the great words of wisdom from everyone that has " been there, done that. " It really is encouraging to know others have gone through it and survived. , That's great!?! I'm glad to hear you've grown up to be a fine young man. That's all anyone can hope for. I was a tad perturbed by the doctor's because they basically told us that Logan wouldn't amount to anything. For example, he would live at home for the rest of his life, he wouldn't be able to go to school or do anything on his own. But when I read e-mails from , Chantelle and other adults with Charge, there is a glimmer of hope. I'll be darned if I somehow let Logan become a statistic. After all, I am his best advocate. As soon as I was told that, I wasn't going to let them tell me what they think is best for him. I will treat him no different than I treat my other child or any future children. He's my sweet face. Thanks again, e mom of Shane, 4 and Logan, 3 Mos (CHaRGE) This e-mail may contain data that is confidential, proprietary or non-public personal information, as that term is defined in the Gramm-Leach-Bliley Act (collectively, Confidential Information). The Confidential Information is disclosed conditioned upon your agreement that you will treat it confidentially and in accordance with applicable law, ensure that such data isn't used or disclosed except for the limited purpose for which it's being provided and will notify and cooperate with us regarding any requested or unauthorized disclosure or use of any Confidential Information. By accepting and reviewing the Confidential information, you agree to indemnify us against any losses or expenses, including attorney's fees that we may incur as a result of any unauthorized use or disclosure of this data due to your acts or omissions. If a party other than the intended recipient receives this e-mail, he or she is requested to instantly notify us of the erroneous delivery and return to us all data so delivered. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2007 Report Share Posted March 17, 2007 Also there is a fed mandated Deaf-Blind Project in your state.. Casey ________________________________________________________________________________\ ____ Be a PS3 game guru. Get your game face on with the latest PS3 news and previews at Yahoo! Games. http://videogames.yahoo.com/platform?platform=120121 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 , I hope you have read my posts about . The doctors said the same things about him. His biological parents never took him home from the hospital. It just makes me so mad to hear about doctors who think they have the right to take hope away. You keep believing in Logan. You and your family will be his champions. " Your can give no greater love than to believe in who I am. " mom to )31) > > > Thank you for the great words of wisdom from everyone that has " been there, > done that. " It really is encouraging to know others have gone through it > and survived. > > , > > That's great!?! I'm glad to hear you've grown up to be a fine young man. > That's all anyone can hope for. > > I was a tad perturbed by the doctor's because they basically told us that > Logan wouldn't amount to anything. For example, he would live at home for > the rest of his life, he wouldn't be able to go to school or do anything on > his own. But when I read e-mails from , Chantelle and other adults > with Charge, there is a glimmer of hope. I'll be darned if I somehow let > Logan become a statistic. After all, I am his best advocate. As soon as I > was told that, I wasn't going to let them tell me what they think is best > for him. I will treat him no different than I treat my other child or any > future children. He's my sweet face. > > Thanks again, > > e > mom of Shane, 4 and Logan, 3 Mos (CHaRGE) > > This e-mail may contain data that is confidential, proprietary or > non-public personal information, as that term is defined in the > Gramm-Leach-Bliley Act (collectively, Confidential Information). > The Confidential Information is disclosed conditioned upon your > agreement that you will treat it confidentially and in accordance > with applicable law, ensure that such data isn't used or disclosed > except for the limited purpose for which it's being provided and > will notify and cooperate with us regarding any requested or > unauthorized disclosure or use of any Confidential Information. > By accepting and reviewing the Confidential information, you agree > to indemnify us against any losses or expenses, including > attorney's fees that we may incur as a result of any unauthorized > use or disclosure of this data due to your acts or omissions. If a > party other than the intended recipient receives this e-mail, he or > she is requested to instantly notify us of the erroneous delivery > and return to us all data so delivered. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 e, My son Ethan was in the NICU for 3 1/2 months and at 6 months old, he was trached. Everything seems like a blur back then (he is now almost 5 years old!), but I do know that having a child with a trach is a lot of work, but everything will become 2nd nature to you after some time. We too refer to Ethan as " juicy " with all of his secretions. He has been on Robinul to dry up his secretions and just recently, he was injected with Botox to his saliva glands. Now, he only requires to be suctioned in the morning, occassionally during the day, and when he is sick. It does get easier. Yes, you need to get nursing care! Every state should have some sort of waiver program that is not based on income. Ethan gets 16 hours a day nursing through our states waiver program. When we don't have night nurses, my husband and I each take 4 hour shifts and sleep in his room. And when you drive in the car, you will need to have someone who can watch your son while you drive. Have the hospital help you get that set up asap as you will need the help when you get home. Jody - mom to Ethan (ChARGE) and --------------------------------- Bored stiff? Loosen up... Download and play hundreds of games for free on Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2007 Report Share Posted March 18, 2007 I think Logan's doctor is a pessimist. Just wondering, does he have any mental compromises? Cuz if he doesn't, then the doctor is DEFINITELY a pessimist. WHen I was born, a pessimist would say " has no chance on living on his own and functioning well in high school. I would be suprised if he got as far as Algebra 1. " and an optimist would say " I think will be great! I wouldn't be suprised if he took AP courses like crazy and got accepted to Harvard or Yale! " I think the doctor might have seen a few sad cases and hasn't seen enough people succeed with a serious medical condition. Also, there are no CHARGErs making the headlines. Yet. Someday, there will be a president with CHARGE (most likely can talk, no facial palsy, no serious torticolis, kyphosis, or scoliosis, and not scared away from presidency due to Govt or AP Govt course (like me) with a strong sense of responsibility and leadership), some scientists with CHARGE, and authors with CHARGE. Also, there could be doctors, but they don't really make headlines. I will be a scientist with CHARGE! Or a doctor with CHARGE! I think with high aspirations and potentials in each young CHARGEr, saying that a mild CHARGEr won't have a great life at birth wil get a slap in the face or a talk lol. If I was a doctor and I heard a CHARGEr say that, I would tell the doctor to look at his ears and look at mine, lol. Oh, maybe you can bring up my life story to Logan's doctor and see what he says. If he says " mental abnormalities " , feel free to tell him my message, " Look around you. Open your eyes. Anything is possible if you believe in it. Cheer up. " RE: Hospital Discharge Thank you for the great words of wisdom from everyone that has " been there, done that. " It really is encouraging to know others have gone through it and survived. , That's great!?! I'm glad to hear you've grown up to be a fine young man. That's all anyone can hope for. I was a tad perturbed by the doctor's because they basically told us that Logan wouldn't amount to anything. For example, he would live at home for the rest of his life, he wouldn't be able to go to school or do anything on his own. But when I read e-mails from , Chantelle and other adults with Charge, there is a glimmer of hope. I'll be darned if I somehow let Logan become a statistic. After all, I am his best advocate. As soon as I was told that, I wasn't going to let them tell me what they think is best for him. I will treat him no different than I treat my other child or any future children. He's my sweet face. Thanks again, e mom of Shane, 4 and Logan, 3 Mos (CHaRGE) This e-mail may contain data that is confidential, proprietary or non-public personal information, as that term is defined in the Gramm-Leach-Bliley Act (collectively, Confidential Information). The Confidential Information is disclosed conditioned upon your agreement that you will treat it confidentially and in accordance with applicable law, ensure that such data isn't used or disclosed except for the limited purpose for which it's being provided and will notify and cooperate with us regarding any requested or unauthorized disclosure or use of any Confidential Information. By accepting and reviewing the Confidential information, you agree to indemnify us against any losses or expenses, including attorney's fees that we may incur as a result of any unauthorized use or disclosure of this data due to your acts or omissions. If a party other than the intended recipient receives this e-mail, he or she is requested to instantly notify us of the erroneous delivery and return to us all data so delivered. ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.446 / Virus Database: 268.18.13/725 - Release Date: 3/17/07 12:33 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 e: First of all: CONGRATULATIONS! " There's no place like home " !!!! If you'd like to call and discuss insurance issues and the like regarding nursing, please feel free to do so (). We had to " fight " at first also, but the trach really needs the nursing hours. Rick got really good at the insurance stuff. Who is your insurance carrier? We often had to deal directly with a supervisor at the insurance carrier, or even the benefits coordinator at his work, and got much more approved for coverage than was available if we simply spoke with the insurance customer service rep. They have access to " typical " coverage issues but aren't always aware of special circumstances within the policies. Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE + JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... _____ From: CHARGE [mailto:CHARGE ] On Behalf Of brandie.m.biszantz@... Sent: Friday, March 16, 2007 3:12 PM To: charge Subject: Hospital Discharge Logan is due to be discharged March 20th and I am soooo nervous. My husband and I just finished our 8 hour (individual) shifts and will have our 24 hour shifts Saturday and Sunday. I don't know if all hospitals require parent's to do that before discharge but Riley had us go through a whole slew of equipment/med/trach training. I must say I was a bit overwhelmed at the beginning of my shift. He was alarming like mad and the nurses kept popping in like I had no idea what was going on......I just wanted to scream, " I have it under control. " I hope it gets a little easier when he gets home. My main concern is the trach and having him hooked up to the CPAP machine. The tubing is so heavy that I'm afraid when I pick him up or move him that he will decanulate himself. But I can't let that stop me for crying out loud. He didn't get any of the love or attention he deserved the first three months of his life. I can't wait to hold him for as long as I want. I was asked in a previous e-mail what the extent of his syndrome is: He has had two laryngoscopies (left and right side in two separate surgeries), malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't have reflux and a tracheostomy. He tracks with his eyes a little but we don't know to what extent he can see, the same for his hearing, they believe he can hear but don't know to what extent. He has facial palsy so he has no facial expressions, no ear lobes, and micropenis as well as very low muscle tone. He does have tetralogy of Fallot and will need heart surgery at nine months. He stays fisted most of the time but wears splints for three hour periods during the day and at night. He is very " juicy " as we have termed it. His secretions are in abundance. He's also a porker. He's almost 12 lbs?! But of course that's to the 24 cal formula they have him on. He takes way too many medications. Two for calcium, two for the secretions to try and minimize them, two diuretics to keep water off his lungs and kidneys, valium, a muscle relaxant, a multivitamin and one for iron. It seems we're going to have to rent out a pharmacy just for him. Also the hospital had promised us some sort of nursing but our insurance requires 50% copay....yeah right....who the heck can afford that. It seems being middle class is a curse. You're danged if you do and danged if you don't. I do have a question for the adults with Charge.....is there anything that you wish could have been done differently when you were being raised in regards to schooling, parenting, etc. Call me crazy but even though Logan is three months, I'm concerned about how he will be viewed and treated by others or if there is anything I can do to make his life more fruitful so he doesn't feel he is any different than anyone else. Blessings to you all. Any suggestions?!? Happy St. 's Day, e mom of Shane 4, Logan 3 Months (CHaRGE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2007 Report Share Posted March 19, 2007 you could alwasy just scream tell them u cant mannage > > e: > > First of all: CONGRATULATIONS! " There's no place like home " !!!! > > If you'd like to call and discuss insurance issues and the like regarding > nursing, please feel free to do so (). We had to " fight " at > first also, but the trach really needs the nursing hours. Rick got really > good at the insurance stuff. Who is your insurance carrier? We often had > to deal directly with a supervisor at the insurance carrier, or even the > benefits coordinator at his work, and got much more approved for coverage > than was available if we simply spoke with the insurance customer service > rep. They have access to " typical " coverage issues but aren't always aware > of special circumstances within the policies. > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE + JRA) > > Mom of Ken (17, Aspergers) > > Wife of Rick > > oganm@... <oganm%40insightbb.com> > > _____ > > From: CHARGE <CHARGE%40yahoogroups.com> [mailto: > CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of > brandie.m.biszantz@... <brandie.m.biszantz%40flagstar.com> > Sent: Friday, March 16, 2007 3:12 PM > To: charge <charge%40yahoogroups.com> > Subject: Hospital Discharge > > Logan is due to be discharged March 20th and I am soooo nervous. My > husband and I just finished our 8 hour (individual) shifts and will have > our 24 hour shifts Saturday and Sunday. I don't know if all hospitals > require parent's to do that before discharge but Riley had us go through a > whole slew of equipment/med/trach training. > > I must say I was a bit overwhelmed at the beginning of my shift. He was > alarming like mad and the nurses kept popping in like I had no idea what > was going on......I just wanted to scream, " I have it under control. " I > hope it gets a little easier when he gets home. My main concern is the > trach and having him hooked up to the CPAP machine. The tubing is so heavy > that I'm afraid when I pick him up or move him that he will decanulate > himself. But I can't let that stop me for crying out loud. He didn't get > any of the love or attention he deserved the first three months of his > life. I can't wait to hold him for as long as I want. > > I was asked in a previous e-mail what the extent of his syndrome is: He > has had two laryngoscopies (left and right side in two separate > surgeries), > malrotation surgery, G-tube surgery, a Nissen (sp) so he doesn't have > reflux and a tracheostomy. He tracks with his eyes a little but we don't > know to what extent he can see, the same for his hearing, they believe he > can hear but don't know to what extent. He has facial palsy so he has no > facial expressions, no ear lobes, and micropenis as well as very low > muscle > tone. He does have tetralogy of Fallot and will need heart surgery at nine > months. He stays fisted most of the time but wears splints for three hour > periods during the day and at night. He is very " juicy " as we have termed > it. His secretions are in abundance. He's also a porker. He's almost 12 > lbs?! But of course that's to the 24 cal formula they have him on. He > takes way too many medications. Two for calcium, two for the secretions to > try and minimize them, two diuretics to keep water off his lungs and > kidneys, valium, a muscle relaxant, a multivitamin and one for iron. It > seems we're going to have to rent out a pharmacy just for him. > > Also the hospital had promised us some sort of nursing but our insurance > requires 50% copay....yeah right....who the heck can afford that. It seems > being middle class is a curse. You're danged if you do and danged if you > don't. > > I do have a question for the adults with Charge.....is there anything that > you wish could have been done differently when you were being raised in > regards to schooling, parenting, etc. Call me crazy but even though Logan > is three months, I'm concerned about how he will be viewed and treated by > others or if there is anything I can do to make his life more fruitful so > he doesn't feel he is any different than anyone else. Blessings to you > all. > > Any suggestions?!? > > Happy St. 's Day, > > e > mom of Shane 4, Logan 3 Months (CHaRGE) > > Quote Link to comment Share on other sites More sharing options...
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