Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 I don't want to scare you but my 9 month old, who has a cleft palate/lip bilateral, was on an OG tube and was doing the same thing as your daughter. he was sweating and working so hard to breathe and turns out he had aspiration pneumonia. We didn't know and it went on for several days and we went to see the dr and were rushed to the ER. His O2 sat was at 83%. They had to intubate him because they thought he was going to have respitory failure. He was in a drug induced coma on a vent for almost a week. I would suggest you take her to the dr to make sure her refluxing didn't cause her to aspirate. It's really hard when they have the OG tube that keeps the flap open because that is what happened to . He didn't have reflux before then. He also has a fundo and a gbutton but he hasn't had any issues with it. We got that while he was in the ICU recovering from the pneumonia. He was in the ICU for over two weeks with it. I just would make sure though that you get into your dr ASAP because she may be sweating because of working so hard to breathe or her heart but if she just saw her cardio dr then she might be good in the heart area. Just go because it's better to be safe than sorry. I regret not taking him in sooner. We almost lost him and I wanted to die when they told me to prepare for the worse. Liz B. Mom to Wesley 3 1/2, Kai 2 1/2 ChARGEr, and 9 month chARgEr and wife to Troy ChArgEr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2003 Report Share Posted October 6, 2003 hi, nice to hear you are enjoying having Emma at home! i bet her personality just shines! Josh didn't like being on his tummy either ... we definately didn't push him to do this because it was obveousily uncomfortable for him, ... so i did similar, gave him the opportunity to gain his strenght by the way i held and carried him ... seemed to work ok, he was happy, i didn't feel like i was causing him extra stress, and he holds his head up like a champ now :0) when she gets blue, it sounds like some milk might be stopping her from breathing or maybe getting into her lungs - are you getting any help from a speech language therapist? they are usually the ones that help with feeding issues. Josh had/has big problems with swallowing his milk ... and he seems to be gradually getting better...well, at solids anyway, a slow process, and now he is going to have his palate surgery soon and i don't know if that will make things better or worse! hopefully better... there are reflux med that makes her digest food quicker, so it has less chance to reflux as it isn't in the tummy for as long, and there are other meds that reduce the acid so that it doesn't burn when it does reflux ... sorry i'm not sure which one of these reglan is ... i think that if you are worried about the sweating (does she have a fever?) then you could take her to her regular dr/ped ... they should be able to check her out and reasure or treat ... one thing i have discovered is that you are allowed to be paranoid about your little charge'r - they have some much going on that you need the support of your ped to help you learn when to get her in to see them... our ped reckons that we need to take Josh in if he has even one " bad day " ... so many of the signs that little babies show that they are sick could mean many things from a new tooth to sore ear to kidney infection! let us know how you get on... jo ds Ben 5-4-99, ds Josh 20-8-02 CHaRGE'r uclbcp gtube fed ----- Original Message ----- > > Our only problem for now and major frustration is the fact that since > she also has the cleft lip/palate and the bilatereal choanal atresia, > she can't eat by herself, or at least we haven't found a way to help > her yet. <snip>> For the past few days she is sweating a lot, we keep the house at 70 > degrees , she is wearing light clothes and she can't stop sweating! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2003 Report Share Posted October 22, 2003 Hi Everybody I have only posted a few times... I just wanted to let you guys know that our little angel Emma went back to heaven this past sunday Oct 19th at 6 am. Words cannot express the way we feel. But we wanted to thank you for the advice you guys gave us. Good luck with your little ones. fer, Omeed and our little guardian angel.. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2003 Report Share Posted October 23, 2003 Our hearts and prayers go out to you and your family. Thank you for sharing with us Christian Lobaugh Husband to Ingrid, Father to (4) and (18 month charger) Emma Hi Everybody I have only posted a few times... I just wanted to let you guys know that our little angel Emma went back to heaven this past sunday Oct 19th at 6 am. Words cannot express the way we feel. But we wanted to thank you for the advice you guys gave us. Good luck with your little ones. fer, Omeed and our little guardian angel.. Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2003 Report Share Posted October 26, 2003 Dear and Omeed, My heart goes out to you. I too lost my little CHARGEr, ei, at 8 weeks. I guess his job was done on earth and God needed him back. I truly know the pain, loss, disbelief you must be feeling. If you need to " chat " please email me at no1hockeybabe@... Peace to you and your family, - mom to: Nicolas 4ys, Stefan 5 1/2mos, ei, my little Angel, 5/5/03-6/28/03 Quote Link to comment Share on other sites More sharing options...
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