Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 YEA!!! We are all so happy for you and your family! ZAK is HOME > From: DW33333333@... > > Hello Everyone, > > We got Zak home last night and it is wonderful. I can finally be at home > with all my children and be with my Tryny and my Zakey at the same time. I > am loving this. > > And I have questions for all of you mothers of trached babies (see there is > something medical I don't know about........................). Zak had to > come home on oxygen through the trach collar and we finally got the right mix > I think (he's on 35% and in the hospital 6 liters but at home we find he does > better on 3 liters). He still seems to have congestion especially in the > right lung so he's on nebulizer treatments every 6 hours with the pitty pats > too. We try not to suction to often, but how often is to much. Here's some > questions (and if you all have any answers to questions I haven't thought of > yet, let me know them too). > > In the hospital he was on a warm air humidifier on the oxygen tank but at > home we have just regular humidifier and he seems to be less " spity " (he just > uzed with spit in the hospital - all out of his mouth, nose and trach) but on > regular humidifier, not any out the mouth and nose, just the trach. Will > cool air verses warm air make a difference? > > I'm really not sure what questions I want or need to ask, I just know that > there is always a question somewhere about something. So I guess what I > really need is any and all answers before I have the questions. Also, how > long does the " trach fear " last (that is what my favorite RT called it). > > After Tryny, I didn't think there was anything more to learn or to fear, but > Zak decided to teach me a lesson in " humility " I guess. And besides, he > couldn't let Tryny have all the spot light. > > Thanks for all of your good wishes, thoughts and prayers. We are all > grateful and care about each and every one of you. > > Love, > The on's: > Debra, , Steph, Kody, Niki, Chas, BJ, Tryny, Seasy, Gabey and Zakarya > > > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Debra, Glad to hear Zakey is home! Merry Christmas and Happy New year to All! Janet Wife to Matt Mom to & (CHaRGEr) 7, nne 2 1/2 Mom to 16 months. Weymouth, Massachusetts, USA <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Debra, I'm so glad you are all home and altogether! Hopefully things will stay that way and be calm for you through Christmas! I can't answer your trach questions, but you know they will here for ya. I'm sure you won't be scared for too long, knowing you guys. Give them both a squeeze from me, Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Re: ZAK is HOME YEA!!! We are all so happy for you and your family! ZAK is HOME > From: DW33333333@... > > Hello Everyone, > > We got Zak home last night and it is wonderful. I can finally be at home > with all my children and be with my Tryny and my Zakey at the same time. I > am loving this. > > And I have questions for all of you mothers of trached babies (see there is > something medical I don't know about........................). Zak had to > come home on oxygen through the trach collar and we finally got the right mix > I think (he's on 35% and in the hospital 6 liters but at home we find he does > better on 3 liters). He still seems to have congestion especially in the > right lung so he's on nebulizer treatments every 6 hours with the pitty pats > too. We try not to suction to often, but how often is to much. Here's some > questions (and if you all have any answers to questions I haven't thought of > yet, let me know them too). > > In the hospital he was on a warm air humidifier on the oxygen tank but at > home we have just regular humidifier and he seems to be less " spity " (he just > uzed with spit in the hospital - all out of his mouth, nose and trach) but on > regular humidifier, not any out the mouth and nose, just the trach. Will > cool air verses warm air make a difference? > > I'm really not sure what questions I want or need to ask, I just know that > there is always a question somewhere about something. So I guess what I > really need is any and all answers before I have the questions. Also, how > long does the " trach fear " last (that is what my favorite RT called it). > > After Tryny, I didn't think there was anything more to learn or to fear, but > Zak decided to teach me a lesson in " humility " I guess. And besides, he > couldn't let Tryny have all the spot light. > > Thanks for all of your good wishes, thoughts and prayers. We are all > grateful and care about each and every one of you. > > Love, > The on's: > Debra, , Steph, Kody, Niki, Chas, BJ, Tryny, Seasy, Gabey and Zakarya > > > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Debra, Here goes nothing. I have been very hesitant to put in my two cents, but..... my daughter also " oozes spit " snot, mucus, whatever you want to call it. She is also trached. I don't know exactly what Zak's problems are, so this information may or may not apply. Ashlyn is suctioned frequently, as soon as any ooze is seen. This keeps her skin under and around her trach dry, very important to avoid fungus. Her nose is sunctioned because she has a short palate which prevents her from swallowing correctly so what is actually coming out her nose is spit. The more you suction the less they aspirate, therefore healthy lungs. Ashlyn is on and has been for over a year pulmonary treatments every 4 hours. If there is any suspicion that she is developing a cold, i.e., more snot, low grade fever, junky feeling when she breaths, breathing care goes up to every two hours. Ashlyn has not had RSV, pneumonia, etc in over a year. She is also followed very carefully by her ENT. Suctioning is not fun and I know Zak probably doesn't care for it. If he is deaf and blind like Ashlyn, give him a cue before you suction so he will know what is goint to happen. We started by touching the back of Ashlyn's hand with the hose turned off. She now actually seems to enjoy the suctioning because she can breath so much better. Ashlyn also gets warm moist air through her trach circuit ask your doc. She is also on oxygen and BIPAP at night. ( Oxygen all the time) Good luck with the trach. They are lifesavers and actually make it much easier to manage some of the problems our kids are faced with. I guess I really jumped in with both feet on this. I hope it is useful information. Mom to Tia, 6, Ashlyn (CHaRGE+) 2, and 9 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 Debra So glad to hear Zak is home. My nephew has had a trach for the last 8 months. (wow I can't believe it has been that long) Regarding the suction...We kind of let tell us when he needs it. It is just one of those things that you learn to hear. At first at every little sound we ran for the suction, half the time the little bit of spit wasn't bothering him as much as suctioning was. Sometimes the need was obvious but wdo but when we weren't quite sure we started by counting to 3 every time we felt like suctioning...then to 5 and 10. Even now though when he is really wet we may suction him several times in a 10 minute window...other times not at all. Just LISTEN...you will know what to do. I hope you got a small portable suction with a case. We affectionately call it the " evil twin " it is really easy to take on the road and move from room to room. is on cool mist at night...it seemed to us to create less secretions than the warm mist at the hospital. But who knows? For us the " TRACH FEAR " was very real but it didn't last much longer than the myriad of other fears associated with all this stuff. Once you start to deal with it it isn't as scary. It is funny because we fought the trach tooth and nail,but it is really not that bad and I never in a million years thought I could say that. Suctioning him is as simple now as wiping his nose or anything else, we don't even stop talking or eating or whatever it is we are doing. I even know for a fact his mother has suctioned him in her sleep!!! I don't know all the history with Zak and Tryny but I gather that you have been through tons already...sounds like even more than most...I'm sure that you will figure this whole trach thing out just like you have figured everything else out. Again...so glad that you are home and together, especially during this magical time of year. Auntie Auntie to __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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