Anyone have a micro preemie with a trach and BPD?

Brittany - posted on 10/30/2009 ( 14 moms have responded )

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My son Mathew was born at 24 weeks at 1 lb 7 oz he is now six months old ans back on the ventilator in the NICU. The doctors are talking about a trach. Does anyone have any advise for us to help us make the decison, to trach or not to trach? He is on tons of medicine for his BPD and will prob. be in the hospital for a long time.

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Amy S - posted on 11/18/2013

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My daughter Allison was born at 26 weeks at 1 lb. 3 oz. (preeclampsia)she is now seven months old and in the PICU She has severe tracheomalacia/laryngomalacia She was trached at 4 months and is doing well she also has BPD and needs ventilator for support and will probably need it for at least the first two years I was very afraid of the trach but decided it would allow her to have different therapies and activities without constantly worrying about extubation I did decide against a gtube and she has a ng but she is eating some by mouth and I would consider a gtube if she stopped showing potential for improvement they found that she had underlying pulmonary HTN and they give her viagara of all things and it has helped tremendously She is now 14 lbs. eating solids and on her way home so don't give up faith even when it looks bad listen to advice but trust your instincts as his mother Good Luck!

Brittany - posted on 12/13/2011

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Mathew got to come home at 16 onths old on August 24 2010 he is now 2 and a half and still has the trach but if off the vent and almost off the O2 he only has O2 to sleep right now. He is doing great. Hes off all meds but his nebs. He is crawling now and can say some words.

Gloria - posted on 04/11/2011

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its the scariest feeling not knowing whats going to happen but as a mom of a trached baby, I took the leap of faith and consented for my son to be trached. he's almost 1 and is still on the vent, but he is strong and smart and is doing better than he would have if we didnt go with the procedure. its scary and it will be hard but it is the best thing for ypur baby and he;ll thank you for it someday. just keep the faith

Bess - posted on 02/01/2010

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Hi Brittany never give up my son was a 24 weeker also the doctors dont alway know I was told many time he would not make it, he turned 1 in january. When we went home they told us he had a pretty dim future but he is now off o2 and meeting all his developmently milestones and nowone ever pics he is a preemie even doctors dont notice till I tell them. Our bubbas are truely amazing

Brittany - posted on 01/28/2010

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Mathew got his Trach on Jan. 20 2010. The doctors said he wouldn't make it through the surgery. He did and is doing so great. They keep saying he is doing WAY WAY better then we ever expected. I just want to say to them, well he is doing WAY better, because you said he wouldn't even live so shut up! They need to just stop thinking he is so weak because he isn't. He didn't even drop his sats during surgery at all. I knew he would be fine. He lived through his heart failing, I knew he would live through this!

Janet - posted on 01/06/2010

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My son Alexander was a 27 weeker, with severe BPD/CLD. He's had a trach for a little over a year, came home from the NICU 9 months ago, was on a vent full time from the trach surgery through September, and has now worked his way up to being off the vent full time (his last "overnight" on the vent was 3 hours on Saturday night). It's work, but it can be done.

I'd say that the trach is the best thing we ever did, all things considered. It got Alexander *home* and he's a happy healthy kiddo, crawling all over the house and learning how to walk and talk, with no tubes on his face, and caught up for height/weight to his actual age.

Melissa - posted on 01/03/2010

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My son Hunter has a trach and vent, and is at home ( has been for the last 6 months)... Sometimes with BPD the only thing you can do is wait for the lungs to grow, and they will grow faster if the child doesn't have to work soooo hard to breathe (i.e. with the vent). Its definitely doable at home.... its not always easy, but it can be done. Hunter has progress 20 fold since he has been home. He started off being "one of the sickest babies Akron Children's had ever had" to almost off the vent now :) Have faith it will get better.... sometimes the trach is the key!

Brittany - posted on 12/28/2009

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Mathew is now 8 months old and still no Trach. He is still on the vent, but he came off a few months ago for 12 hours and has been as low as 30% O2 on the vent so the doctor doesn't want to jump into doing one. But now he is back up to 100% O2 and has been for a few weeks now because he got some virus they think, all the test were negative so they don't really know what caused it. So now I don 't know what they want to do.

Mandy - posted on 11/09/2009

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Our baby Isabella was a 24 weeker, now 9 months old. She has been ventilated on numerous occasions and has very bad CLD. She had her trache in September and it was absolutely the best decision ever. We were also so nervous about the idea of a trache. She is so comfortable with her breathing now and has grown and developed so much since. We are now finally planning her discharge home.She is still on vent 24 hours a day but this should improve with time You will have nurses at least at night to help with his care.Hope that helps

Yvette - posted on 11/03/2009

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By the way Faith has BPD also and tomorrow she will be in the hospital for 8 months. You also have to make sure you are apart of Matthew's care while your at the hospital. Make sure you question those doctors and just don't take there word.

Yvette - posted on 11/03/2009

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Brittany it will be okay. My grand baby faith will be coming home with 30 days and she will have a vent and a trach. Our grand baby coded 5 times in one day. The trach was last medical option outside of prayer. It has been 3 weeks and she is gaining weight and is not using all her calories to breath. Sunday, November 1st she came off ALL her drugs except for her dieuralic and reglan. They wanted to give her an J tube because she kept vomiting her formula - she already has a G-tube so we said no and had them change her formula to a soy based formula. Since the change she has vomitted twice but it was due to suctioning. Matthew will be able to come home with a vent and a trach, they will require you have a nurse in the home for a min. of 16 hours per day. The discharge planner will work all those details out. Be encouraged it is getting better and Matthew will be home soon. We are continuing to pray for Matthew and your entire family.

Brittany - If God didn't think you couldn't handle it, you would not be going through this. He will not put NO MORE on you than you can bare. Hold On!!!

Brittany - posted on 11/03/2009

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Mathew was transported to a better Children's hospital and they said it is his lungs so he will have to have the trach soon because he will be on the vent for a long time. Do you know if they can come home with the trach and vent? And thanks Yvette for praying for him, every prayer helps.

Yvette - posted on 11/01/2009

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My grandbaby was 24 weeks and 1lb 4 oz and is 8 months old. She is currently is on a vent and has a trach. We really didn't want to give her the trach but since she has received it she is more comfortable and able to not work so hard a breathing. We will be praying for Matthew

Monique - posted on 10/31/2009

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Have they had an ENT look at him? My son was having problems breathing and they also were talking about a trach with him mainly because he was about a year old and could not keep his oxygen level up. Since he was about three months he developed this noisy breathing and retracted everytime he breathed in. They transvered to him to a more experienced children's hospital and they took him into the OR for a broncoscopy and possible trach. What they found were cyst growing in his airway. The cyst were covering 80% of his airway'. They removed the cyst and he has been much better. he still has issues with his airway like when he gets sick. The good thing about trachs is that they can be removed when he overcomes his problem. When my son goes to the airway clinic, there are many babies that have trachs. I felt that if it would benefit him, i would go ahead and do it. They can always take the trach out when he is stronger or the problem is corrected.

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