Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 , Luke is such a doll. He'll probably be even more active now-a good steady supply of oxy. can do that for you. had a trach, which allowed us to have rn's to help watch her. It gets old-hat pretty quickly. It does require diligent eyeballs though. Good for Luke! in Ma. (, 21 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 I'm not sure if my last post about Luke having surgery went through to the list or not. I haven't seen it but I just switched my home e-mail to my yahoo e-mail so I can check in while we're in the hospital so I think I might have missed some messages after we left Wednesday morning. So here's an update on Luke. He went in for surgery on Wednesday afternoon. The ENT did a bronch and then a trach after seeing how severe his airway was when he falls asleep. He said he may only need it for 18 months to 2 years and may be able to do some corrective surgery in that time unless he outgrows it. Recovery is going well. Lots and lots of secretions right now. I'm sure this is going to be very different for all of us, learning how to take care of him now, but I'm hoping it'll be different in a good way now that he can breathe at night. I'm sure there are a lot of you who've been through this so any words of wisdom would be greatly appreciated right now. I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a speedy recovery. Thanks. Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph --------------------------------- We have the perfect Group for you. Check out the handy changes to Yahoo! Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 , I don't remember seeing anything before this. But...I am glad things are going well. I am sure it will be an adjustment, but you've been through worse! Know I am thinking of you all. And..the pics are GREAT! Your scary little bat is pretty cute! pam > I'm not sure if my last post about Luke having surgery went through to the > list or not. I haven't seen it but I just switched my home e-mail to my yahoo > e-mail so I can check in while we're in the hospital so I think I might have > missed some messages after we left Wednesday morning. > > So here's an update on Luke. He went in for surgery on Wednesday afternoon. > The ENT did a bronch and then a trach after seeing how severe his airway was > when he falls asleep. He said he may only need it for 18 months to 2 years > and may be able to do some corrective surgery in that time unless he outgrows > it. Recovery is going well. Lots and lots of secretions right now. I'm sure > this is going to be very different for all of us, learning how to take care of > him now, but I'm hoping it'll be different in a good way now that he can > breathe at night. I'm sure there are a lot of you who've been through this so > any words of wisdom would be greatly appreciated right now. I'm sure I'll > have a lot to learn. Please keep Luke in your prayers for a speedy recovery. > Thanks. > > > Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph > > > > --------------------------------- > We have the perfect Group for you. Check out the handy changes to Yahoo! > Groups. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 had a trach for a while - it does get easier - we never had nursing but I wish we had. There is a great trach website and group - s trach page that you can go for support. http://tracheostomy.com/ I hope you have an uneventful recovery. 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 Luke has a trach now I'm not sure if my last post about Luke having surgery went through to the list or not. I haven't seen it but I just switched my home e-mail to my yahoo e-mail so I can check in while we're in the hospital so I think I might have missed some messages after we left Wednesday morning. So here's an update on Luke. He went in for surgery on Wednesday afternoon. The ENT did a bronch and then a trach after seeing how severe his airway was when he falls asleep. He said he may only need it for 18 months to 2 years and may be able to do some corrective surgery in that time unless he outgrows it. Recovery is going well. Lots and lots of secretions right now. I'm sure this is going to be very different for all of us, learning how to take care of him now, but I'm hoping it'll be different in a good way now that he can breathe at night. I'm sure there are a lot of you who've been through this so any words of wisdom would be greatly appreciated right now. I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a speedy recovery. Thanks. Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph --------------------------------- We have the perfect Group for you. Check out the handy changes to Yahoo! Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 too cute!! Luke has a trach now I'm not sure if my last post about Luke having surgery went through to the list or not. I haven't seen it but I just switched my home e-mail to my yahoo e-mail so I can check in while we're in the hospital so I think I might have missed some messages after we left Wednesday morning. So here's an update on Luke. He went in for surgery on Wednesday afternoon. The ENT did a bronch and then a trach after seeing how severe his airway was when he falls asleep. He said he may only need it for 18 months to 2 years and may be able to do some corrective surgery in that time unless he outgrows it. Recovery is going well. Lots and lots of secretions right now. I'm sure this is going to be very different for all of us, learning how to take care of him now, but I'm hoping it'll be different in a good way now that he can breathe at night. I'm sure there are a lot of you who've been through this so any words of wisdom would be greatly appreciated right now. I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a speedy recovery. Thanks. Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph --------------------------------- We have the perfect Group for you. Check out the handy changes to Yahoo! Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 , I'm sure it'll be a big adjustment but Luke will breathe so much easier when sleeping and that will be so wonderful for him. THinking of you all, > > I'm not sure if my last post about Luke having surgery went through to > the list or not. I haven't seen it but I just switched my home e-mail to my > yahoo e-mail so I can check in while we're in the hospital so I think I > might have missed some messages after we left Wednesday morning. > > So here's an update on Luke. He went in for surgery on Wednesday > afternoon. The ENT did a bronch and then a trach after seeing how severe his > airway was when he falls asleep. He said he may only need it for 18 months > to 2 years and may be able to do some corrective surgery in that time unless > he outgrows it. Recovery is going well. Lots and lots of secretions right > now. I'm sure this is going to be very different for all of us, learning how > to take care of him now, but I'm hoping it'll be different in a good way now > that he can breathe at night. I'm sure there are a lot of you who've been > through this so any words of wisdom would be greatly appreciated right now. > I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a > speedy recovery. Thanks. > > > Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph > > > --------------------------------- > We have the perfect Group for you. Check out the handy changes to Yahoo! > Groups. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 3, 2006 Report Share Posted November 3, 2006 thats good should b of some help > > , I'm sure it'll be a big adjustment but Luke will breathe so much > easier when sleeping and that will be so wonderful for him. THinking of > you > all, > > > On 11/3/06, Snyder <proudmary730@...<proudmary730%40yahoo.com>> > wrote: > > > > I'm not sure if my last post about Luke having surgery went through to > > the list or not. I haven't seen it but I just switched my home e-mail to > my > > yahoo e-mail so I can check in while we're in the hospital so I think I > > might have missed some messages after we left Wednesday morning. > > > > So here's an update on Luke. He went in for surgery on Wednesday > > afternoon. The ENT did a bronch and then a trach after seeing how severe > his > > airway was when he falls asleep. He said he may only need it for 18 > months > > to 2 years and may be able to do some corrective surgery in that time > unless > > he outgrows it. Recovery is going well. Lots and lots of secretions > right > > now. I'm sure this is going to be very different for all of us, learning > how > > to take care of him now, but I'm hoping it'll be different in a good way > now > > that he can breathe at night. I'm sure there are a lot of you who've > been > > through this so any words of wisdom would be greatly appreciated right > now. > > I'm sure I'll have a lot to learn. Please keep Luke in your prayers for > a > > speedy recovery. Thanks. > > > > > > Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph > > > > > > --------------------------------- > > We have the perfect Group for you. Check out the handy changes to Yahoo! > > Groups. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Hi , I am glad to hear that Luke is recovering well. One other thing I didn't mention in my last e-mail is that Felix also gets botox injections in his two main salivary glands to decrease his secretions. This works well for him and cuts down on the suctioning. If Luke's secretions persist, you might suggest it to your ORL doctor (we had to bring it up to ours - we brought in the article from the CHARGE website!) It was the first time Children's Hospital Boston had done the injections on a child as young as Felix. Best of luck and if you have any trach questions, feel free to e- mail me. What type of trach does he have? Felix uses a Shiley 3.5 Pedi trach uncuffed. > > I'm not sure if my last post about Luke having surgery went through to the list or not. I haven't seen it but I just switched my home e-mail to my yahoo e-mail so I can check in while we're in the hospital so I think I might have missed some messages after we left Wednesday morning. > > So here's an update on Luke. He went in for surgery on Wednesday afternoon. The ENT did a bronch and then a trach after seeing how severe his airway was when he falls asleep. He said he may only need it for 18 months to 2 years and may be able to do some corrective surgery in that time unless he outgrows it. Recovery is going well. Lots and lots of secretions right now. I'm sure this is going to be very different for all of us, learning how to take care of him now, but I'm hoping it'll be different in a good way now that he can breathe at night. I'm sure there are a lot of you who've been through this so any words of wisdom would be greatly appreciated right now. I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a speedy recovery. Thanks. > > > Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph > > > > --------------------------------- > We have the perfect Group for you. Check out the handy changes to Yahoo! Groups. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Hi . I've already mentioned the botox thing to our ENT. He said we could certainly try it but he's done it about 15 times and hasn't had any success with it yet. He thinks that removing and tieing off salivary glands is the best bet if need be. This scares me a little because I don't know much about it. I'm worried it can make him too dry and that it's not reversible. I just haven't had a chance to ask those questions yet. So botoxing worked pretty well for Felix huh? I've heard of it both being successful and unsuccessful. I think it would probably be worth a shot. Anyone else have any botox success stories or know anything about removing salivary glands? I'm sorry I can't answer what kind of trach Luke has yet but I do know it's uncuffed. Thanks for the support. kzkoehler wrote: Hi , I am glad to hear that Luke is recovering well. One other thing I didn't mention in my last e-mail is that Felix also gets botox injections in his two main salivary glands to decrease his secretions. This works well for him and cuts down on the suctioning. If Luke's secretions persist, you might suggest it to your ORL doctor (we had to bring it up to ours - we brought in the article from the CHARGE website!) It was the first time Children's Hospital Boston had done the injections on a child as young as Felix. Best of luck and if you have any trach questions, feel free to e- mail me. What type of trach does he have? Felix uses a Shiley 3.5 Pedi trach uncuffed. > > I'm not sure if my last post about Luke having surgery went through to the list or not. I haven't seen it but I just switched my home e-mail to my yahoo e-mail so I can check in while we're in the hospital so I think I might have missed some messages after we left Wednesday morning. > > So here's an update on Luke. He went in for surgery on Wednesday afternoon. The ENT did a bronch and then a trach after seeing how severe his airway was when he falls asleep. He said he may only need it for 18 months to 2 years and may be able to do some corrective surgery in that time unless he outgrows it. Recovery is going well. Lots and lots of secretions right now. I'm sure this is going to be very different for all of us, learning how to take care of him now, but I'm hoping it'll be different in a good way now that he can breathe at night. I'm sure there are a lot of you who've been through this so any words of wisdom would be greatly appreciated right now. I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a speedy recovery. Thanks. > > > Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph > > > > --------------------------------- > We have the perfect Group for you. Check out the handy changes to Yahoo! Groups. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 , My son Ethan was trached when he was 6 months old. Originally, our ENT thought we'd only have it for a few years or so until his airway got bigger, but here we are now 4 years later. It does get easier with the care and I can't imagine Ethan living without it for now. I hope you are eligible for nursing either through your insurance or state you live in. The state pays for 16 hours a day nursing for us because of medical necessity. Let me know if you have any questions with the trach. Jody Jody - mom to Ethan (ChARGE) and --------------------------------- Sponsored Link Mortgage rates near historic lows: $150,000 loan as low as $579/mo. Intro-*Terms Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 , has Luke been on an apnea monitor this whole time? I only ask because I wonder how it is you knew he needed a trach? Meagan's breathing had gotten a little weird at night, but once we had her decompressed (Chiari fizxed), she lost all the obstructive apnea. But, it has returned as of late .....but she also is sick. Anyhow, just curious. Meagan hasn't been on an apnea monitor since she was 4 months old. , mommy to Meagan (CHaRgE) and 2 year old twins, and big brother 4 years, married to the best daddy in the world for 9 years! -- Luke has a trach now I'm not sure if my last post about Luke having surgery went through to the list or not. I haven't seen it but I just switched my home e-mail to my yahoo e-mail so I can check in while we're in the hospital so I think I might have missed some messages after we left Wednesday morning. So here's an update on Luke. He went in for surgery on Wednesday afternoon. The ENT did a bronch and then a trach after seeing how severe his airway was when he falls asleep. He said he may only need it for 18 months to 2 years and may be able to do some corrective surgery in that time unless he outgrows it. Recovery is going well. Lots and lots of secretions right now. I'm sure this is going to be very different for all of us, learning how to take care of him now, but I'm hoping it'll be different in a good way now that he can breathe at night. I'm sure there are a lot of you who've been through this so any words of wisdom would be greatly appreciated right now. I'm sure I'll have a lot to learn. Please keep Luke in your prayers for a speedy recovery. Thanks. Luke's new Halloween pics: http://www.caringbridge.org/mn/lukejoseph --------------------------------- We have the perfect Group for you. Check out the handy changes to Yahoo! Groups. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Hi , From the little bit that I know, there is no consensus on the dosage for Botox and some doctors paralyze all glands and others just the two main ones. At 2 1/2 months Felix was given 10ccs of Botox into each of his two main salivary glands. Maybe the problem your doctor is having is due to dosing? We are seeing a new ORL doctor for our next round of Botox in a couple of weeks, so I will ask him what dose he gives and pass it along if it helps. Thanks, > > > > I'm not sure if my last post about Luke having surgery went > through to the list or not. I haven't seen it but I just switched > my home e-mail to my yahoo e-mail so I can check in while we're in > the hospital so I think I might have missed some messages after we > left Wednesday morning. > > > > So here's an update on Luke. He went in for surgery on > Wednesday afternoon. The ENT did a bronch and then a trach after > seeing how severe his airway was when he falls asleep. He said he > may only need it for 18 months to 2 years and may be able to do some > corrective surgery in that time unless he outgrows it. Recovery is > going well. Lots and lots of secretions right now. I'm sure this > is going to be very different for all of us, learning how to take > care of him now, but I'm hoping it'll be different in a good way now > that he can breathe at night. I'm sure there are a lot of you > who've been through this so any words of wisdom would be greatly > appreciated right now. I'm sure I'll have a lot to learn. Please > keep Luke in your prayers for a speedy recovery. Thanks. > > > > > > Luke's new Halloween pics: > http://www.caringbridge.org/mn/lukejoseph > > > > > > > > --------------------------------- > > We have the perfect Group for you. Check out the handy changes to > Yahoo! Groups. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.