Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 Hi All, Just wanted to let you know what is going on with Jourdan. As Iris posted, they had to put her back on the ventilator Wednesday at about 11 AM. She had been off and doing well since 1 PM Tuesday. All of her numbers were good up until 10 AM and then everything went bad at once. And now they want to do the Trach. Kelley is very reluctant with good reason. The heart surgeon says the trach will complicate the next surgery. Jourdan has a very short neck and the trach will be in the way when they cut the chest bone. Also, we had problems with her incision healing after the first surgery, and he mentioned that the trach might add to the problems healing after the second surgery. Kelley is just searching for another way to go. I don't know if there is one, but if anyone has any ideas, please reply. Does anyone know anything about dilation of the airway? It seems like Jourdan does well breathing over the vent which is set on the lowest setting.....no oxygen. It seems like she only has problems when they take the tube out.....like the tube is giving her a clearer airway. Also, we are still having big problems with secretions. Kelley is worried that the heavy secretions will form a mucus plug if we have a trach. I'm not sure what that means, but Kelley feels if that happens we will be in the same shape we are in now....that the trach will not help. Is she correct? Sorry to go on and on, but there are so many questions. My brain is tired from trying to think of some way to make Jourdan comfortable and stable for just two more months. I can't help but feel if we can get her through this next surgery, everything will be so much better. She will get stronger and the breathing issue will resolve itself. But we certainly can't keep her interbated for 2 months. If anyone has any suggestions, we will welcome new ideas. Thanks for listening and being concerned. It helps to know that others understand. I'm really tired of friends and family that keep asking, "Well, is the baby all well now??" I know that they mean well, but they make me want to scream. I even had someone ask, "Does she still have that heart thing?" People just don't realize how serious all her problems are and that they are not going away. I know that everyone has told me the first year is bad, but this is torture. Lynn (a tired and troubled grandmother of Jourdan-CHARGE 4 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2001 Report Share Posted July 24, 2001 Lynn, Wow, sounds like such a catch 22 with the whole trach decision. I think a couple of good suggestions have been offered with the Bipap and Cpap, maybe they could try that. I wish I had more trach knowledge. Fortunately, we've been lucky with a lot of the airway issues that a lot of the kids have. Your last few lines sure brought back a lot of memories about that first year, and although it doesn't seem to help much at the time (I remember thinking they were all crazy telling me this, too) it does get easier. Those big medical nightmares that need to get resolved certainly do make life "torture" for everyone involved until things become stable and your life moves into the "therapy" stage. People's questions do become aggravating after awhile when it seems they don't realize the "hugeness" of what is going on. With time, you will be able to answer those easier, especially when Jourdan is more stable. I know this isn't much help Lynn, but we're here for you and we know what your family is going through. Please keep us posted, Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 Jourdan/Trach Hi All, Just wanted to let you know what is going on with Jourdan. As Iris posted, they had to put her back on the ventilator Wednesday at about 11 AM. She had been off and doing well since 1 PM Tuesday. All of her numbers were good up until 10 AM and then everything went bad at once. And now they want to do the Trach. Kelley is very reluctant with good reason. The heart surgeon says the trach will complicate the next surgery. Jourdan has a very short neck and the trach will be in the way when they cut the chest bone. Also, we had problems with her incision healing after the first surgery, and he mentioned that the trach might add to the problems healing after the second surgery. Kelley is just searching for another way to go. I don't know if there is one, but if anyone has any ideas, please reply. Does anyone know anything about dilation of the airway? It seems like Jourdan does well breathing over the vent which is set on the lowest setting.....no oxygen. It seems like she only has problems when they take the tube out.....like the tube is giving her a clearer airway. Also, we are still having big problems with secretions. Kelley is worried that the heavy secretions will form a mucus plug if we have a trach. I'm not sure what that means, but Kelley feels if that happens we will be in the same shape we are in now....that the trach will not help. Is she correct? Sorry to go on and on, but there are so many questions. My brain is tired from trying to think of some way to make Jourdan comfortable and stable for just two more months. I can't help but feel if we can get her through this next surgery, everything will be so much better. She will get stronger and the breathing issue will resolve itself. But we certainly can't keep her interbated for 2 months. If anyone has any suggestions, we will welcome new ideas. Thanks for listening and being concerned. It helps to know that others understand. I'm really tired of friends and family that keep asking, "Well, is the baby all well now??" I know that they mean well, but they make me want to scream. I even had someone ask, "Does she still have that heart thing?" People just don't realize how serious all her problems are and that they are not going away. I know that everyone has told me the first year is bad, but this is torture. Lynn (a tired and troubled grandmother of Jourdan-CHARGE 4 months) 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2001 Report Share Posted July 29, 2001 In a message dated 7/28/01 10:05:46 PM US Eastern Standard Time, BRJR.WILLIAMS@... writes: << .Also, we are still having big problems with secretions............... >> Secretions are always a big problem with Zak. We got rid of the secretions coming from the mouth and nose by having " spit glands " removed. That worked wonders and he does not have any more problems there, but secretions out the trach are always like " Niagara Falls " . We have him on robinol and it helps some but still goopy. Debra Quote Link to comment Share on other sites More sharing options...
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