Laryngomalacia & Tracheomalacia - All Discussions Combined Here!

Hope all is well with everyone!
Overall Buddy is doing pretty good. He had another nissen dialation and endoscopy done last week. They finally found out why he is having trouble eating. He has a floppy esaphagus that is having a hard time pushing food thru the nissen. He is having a modified barium swallow on the 24th. Hopefully they can fix this problem. He is also having a kidney function test and sweat test done on the 23rd. Even though he has been through a lot he is in good spirits.

Merri

hi im new on here and am so glad ive found this forum after many years. My son Dennis who is 4 and half has cerebral palsy, tracheamalcia and larygomalcia. He is a very socialable, happy little boy.
He started having stridor at 3mths old with chest resessing only when awake and after tests he was diagnosed tracheamalcia and laryngomalcia. We were seen at great ormond and they said they could trim some of the floppy tissue away in his upper airway which mgt help him, so we went ahead with the op but unfortunetly it made no difference to him.
We have at home oxygen, suction and nebs for when hes got coughs and colds or starts of chest infs.
We too find the winter mths very hard, he has to have antibiotics from sept to march every year. Last yr we had a whole yr of no hospital admissions which was fantastic and we thought maybe his airway is getting stronger but since this jan its been virus after virus and each time its been taking longer to get him off oxygen. Hes currently still needing overngt oxygen but got him off it in daytime today.
I would love to speak to other parents with children like our dennis.
thanks for reading
josie x

Hi Josie

Welcome to Share. It makes such a difference to share with people who understand the heartache, frustration and just day to day emotional wear both happy and sad that taking care of children with medical issues can be. It has been a great source of comfort for me. I am glad that Dennis is improving and hope to hear that he is off of night oxygen soon.

Take care,
Ellen

Hi! I just stumbled upon this site today. My daughter, Adriana, is 5 weeks old. We started noticing that she breathed a little loud at only a few days old and took her to children's hosiptal to get looked at when she was only 2 days old. We were told that because she came through the birthing canal so quickly she was just still clearly out mucus and such. They sunctioned out her nose and sent us home. That seemed to work and make sense for about a week. At a week old she started breating VERY loud and VERY FAST and Hard. Her chest would cave in, nasal flare and head bob. We went back to Childrens Hospital and were referred to an ENT. We saw the ENT 2 days later who told us our daughter was fine and had stridor (loud breathing) and would outgrow this, not to worry. I was not comfortable with what I was told because her breathing was so hard and fast (she was however gaining weight through all of this and her oxygen levels were always good) A week after she was scoped by the ENT dr I took her back to Children's for her fast breathing. She was put on oxygen (high flow drip) another ENT dr scoped her again through the nose and determind that she has severe laryngomalacia. It was also determined that she had elevated levels of carbon dioxide due to how hard she was working to breath. She was admitted to the intenisve care unit at Childrens and 2 days later had surgery(Supraglottoplasty). She was on a breathing tube for 24 hours and then back on the oxygen for a few more hours. She was then able to breath fine on her own and we were released 2 days later. The surgery was a week ago yesterday and she is doing great so far. We go back to the ENT on the 16th. Has anyone else been through this surgery? Did the issues come back? The ENT said some children do have to have the surgery done again. I long for worry free days and nights again!

First, welcome to share and congratulations on the birth of your beautiful daughter. I am sorry you have had to go through so much in just five weeks but it sounds like after a few false starts, you have found a great ENT. SOme kids have to wait even longer for a correct diagnosis so this may be hard to believe with all of your worry that you are lucky. My daughter has not had this surgery but Buddy may have and hopefully his mother will chime in soon. She is a great source of information. I am glad she is doing well and your worry is normal. Moms here often find that blogging here, going to the community center on this site, or talking to the social worker at their hospital helps to ease their worry just by saying it out loud. Good luck and please keep us posted.
Take care,
Ellen

I have two babies (7 mos and 19 mos) with laryngomalacia and they both have had issues with ear infections. Have any of the other mothers had similar experiences? They both have had to get tubes because every cold has become an ear infection. Also, I feel like they are both waaaayyy too medicated (prevacid, singulair, ear drops, breathing treatments), once again, any other moms in my boat?

Welcome to Share. I know how it is to feel overwhelmed and I only had one. It sounds like your children (as hard as this is to believe) are on normal to low amounts of medicine for children with these kind of conditions. Abigail takes about 8 medications/supplements per day usually and more when she is sick. I used to worry about overmedicating and then we would pull back (on medical advice) and she would get pneumonia each time and then I stopped worrying. This is the first spring we have dropped her meds on medical advice w/o ending up in the ER and it mostly has to do with being at a healthier weight etc. All of the medications seem correct and I know some kids are on constant antibiotics with this condition. If you have anymore questions or want to vent. We're here. Sometimes starting a blog helps you vent and keep track of their successes overtime. Sometimes we feel like we are going nowhere with our children who have chronic illnesses but when we reflect back we can see the strides that they do make.

Take care,
Ellen

we had our follow up from surgery with the ent on friday and he is on the fence of wether she will need surgery again..we are about 50/50. We will be going to the ent every two weeks to check progress. He is hoping she can outgrow from here but he is not convinced yet so we will see. We have to do a swallow study now as well. I am waiting on a call back to schedule it. Hopefully that will turn out okay.

I am keeping my fingers crossed that your daughter will not need surgery again. I will keep thinking happy thoughts.

Take care,
Ellen

We were back in the hospital the week before last and had all sorts of test run. She had an EKG and ultrasound on her heart (both normal). She had a sleep study which showed severe obstructive apnea and some central apnea. Because of the central apnea she had an MRI on her brain which also came back normal. But, because of the obstructive apnea she has oxygen 24/7 now (.25 liter). With all this her ENT wants to go back to the operating room.

Adriana will be having a second surgery tomorrow. She is having the supraglottoplasty again and addition a pulmonary dr will be in the OR doing a bronchostopy. We will be in the ICU for a few days. Praying that all goes well and no other issues are found.

Please keep my sweet baby girl in your thoughts and prayers tomorrow as she tackles another surgery.

Definitely will be in my thoughts and prayers! Let us know how it goes.

-Jackie

My son is 3 weeks old. At four days old my son all of a sudden turned blue. Me being a mother of two I knew this was instant trouble when I phone the nurse the took him to the back and a while later he had to be rushed of to another hospital to there NICU. My baby had stopped breathing and for about two weeks no one knew why he was losing his oxygen. And I finally got the saying from an ENT after he had the barium test done that he has Tracheomalacia. And also had 2 episodes when they did his acid reflux test. He's on medicine for acid reflux, but they say his Tracheomalacia is severe. I am worried for my baby he's three weeks now and I havent got to take him home i want him to get better and be at home with his family they say he might to have surgery and I'm afraid because hes only 3weeks. Have anyone else had an infant this young suffer from this

Welcome to share and congratulations on the birth of your son. Children with tracheomalacia can require surgery. If you are not comfortable with anything your son's doctors are saying, I would ask questions. Also, the nurses can be a great source of information after the doctors leave in the NICU, as they provide a great amount of day to day care and are good at providing historical examples. The NICU ride goes up and down and we all hope that he has more good days than bad.
Please keep us posted. You may consider starting a blog as a helpful place to keep your thoughts.
Take care,
Ellen

My son also has tracheomalacia and Tracheal Papalomatosis & requires airway surgery every 2 weeks to shave and dialate his airway...He is on 1/8th liter of o2....In additon to his airway issues he has a g-tube & requires physical therapy 2times a week...Honestly the o2 is the most difficult thing to deal with & is the most bothersome to Ayden....We will be very greatful when he is able to come off of the oxygen completely....Stick in there everyone...It is really helpful to find families with similar situations to overcome!

Hi. My son is 10 months old now and was officially diagnosed with laryngomalacia at 4 mo. The EENT just told us he would eventually outgrow it by 12-18 mo and not much else. We have been always concerned that he has a difficult time with feeding/drinking especially when he has a cold (which has unfortunatly been pretty much most of the time in the past 6 months- but knock on wood we have been doing great in May)and he seems to have a hard time with foods with more texture. Of course, the pediatrician always asks "can he drink from a sippy cup" as a developmental cue - but I don't think he can even figure out how to use one and those things require quite a bit of suction to use, which I would assume would cause a negative pressure on a weak larygnx. If anyone with the older LM infants/children can just advise me on if this is normal, that would be great. He otherwise is a happy kid, minimal reflux which I never bothered to treat because it never seemed to bother him. Reading through many of your posts, I am sure most of you will be thinking this sounds like the least of your problems.
I am also curious if the "they will grow out of it" is just because their airways are bigger and there is less inspiratory pressure to affect the weak larygngeal cartilage so thye sound better, or does the cartilage mature and get stronger as they get older. Any answers?

Over time their airways usually continue to develop and stiffen as they should. My daughter was supposed to "grow out of it" as well and when they did a scope at three, she still had it (but it was better). Hers was in her bronchi though. She had a lot of reflux issues so eating has been an issue for us. If you use the "take and toss sippy cups", it does not require as much force and they really don't leak (plus less parts). Abby did better with those. It is worth a shot. I know some people go to straws but Abigail had a lot of trouble with those. We got her a Nuby straw cup and she was able to learn with that. She liked those Gerber graduates potato things with vegetables (not too much texture) and lots of calories (a big issue for us).
Welcome to Share and keep us updated. Whenever a child is in pain, or unable to do something it is hard for the parents no matter how different it may seem compared to the pain of others and we are all here for each other.
Take care.
Ellen

thanks for your reply! Of course, as fate would have it, a day after I posted this Alec crawled over to his brother's abdandoned AVENT sippy cup and took a swig...problem solved..he seems to be able to handle that brand just fine. Of course, ironically as I had also bragged that May had been cold free, Trevor, the owner of the aforementioned sippy cup started sneezing all over the place yesterday and Alec started with his congestion this am. Oh well....

Adriana's surgery was a little over a week ago. She did great during surgery. The pulmonary dr did a wash of her lungs and took a culture because she had some inflamation in her lower airway. The results came back good! We were also able to come off of her continuos oxygen as her ENT dr cut away a little more tissue and that helped! We follow up with the ent this thursday and then pulmonary on the 1st. Praying that we are on an upward swing from here!

Congratulations on the good outcome!

Keep us updated.

Ellen

My name is dawn. My daughter chloe was born in january 2010 at 24 weeks gestation. She is now 7 1/2 months old. Chloe was diagnosed with trachiobronchiomalasia when she was 4 months old. She is now trached and has been moved to picu. She's never come home from the hospital. They are suspecting she will need to be there for a year to a 18 months from now. Has anyone out there experienced anything like this?

Hello and welcome to Share. I am so sorry to hear of the difficulties your little Chloe is having after being born so premature. I don't have any experience with anything like that myself, but just wanted to let you know that I'm thinking of you. I'm sure someone else with experience will pop in soon.
Stacy

Hello Everyone
It has been a very long time since i posted on here. I just wanted to let everyone know how buddy is doing. Overall he is well. He still has his mic-key button feeding tube. He is still having trouble with his lazy esaphagus which limits the amount he can eat by mouth. His nissen has become loose which is causing him to reflux and aspirate which puts him in respiratory distress. They are going to do another scope to confirm this and then schedule another surgery. This means he will have the feeding tube a lot longer than expected. The tracheo and laryngo malacia have greatly improved but not resolved. He is almost 5 years old now.

I hope everyone else is doing well
Merri

I know there are 2 Moms on Share with similar situations, Leigh and Laura I am going try to get a hold of them for you!'===

Welcome!

Hi Merri,
My son Tucker is 4 years old, and he has a mickey feeding tube. He got it when he was 3 months old (along with a nissen) because he was getting a trach and the doctors didn't want him eating by mouth at all because of the fear of reflux.

Now his trach has been out for almost one year, but he refuses to eat by mouth, so he will also have his feeding tube much longer than we thought. (His nissen is still in place).

So when they schedule another surgery, they are just re-doing the nissen? If the nissen is repaired, that should fix the reflux and aspiration, correct? I really hope it does! Then maybe you can start moving to more oral feeds.

Good luck and keep us updated,
Leigh

Hi Merri! My son has a feeding tube, also a Mic-Key, and he will have it for a long time. My son was born with a birth defect with his esophagus and couldn't eat for a long time. Because of this he has a feeding tube and a trach. My son will also have a feeding tube for a long time. I am so glad his tracheomalacia and laryngomalacia have improved, I hope they keep improving!
Laura

Hello Leigh and Laura
Buddy got his mickey back in january due to his reflux was getting worse as he got older. Usually it improves with age. They also did a nissen to control the reflux. Prior to the nissen he was aspirating and it was causing repeated respiratory distress, pnemonia, and bronchitus. He also had bacteria in his lungs called h-pylori and nodules were growing in his lungs and esaphagus. After his surgery he was not able to eat even jello by mouth because he would choke and turn blue. He was able to eat just fine before he had the surgery. They wont admit to messing something up though. They thought this was due to the inflamation from surgery. Well weeks later and no improvement they discovered that he now has a lazy esaphagus. It can take up to a minute for liquids to pass from his esaphagus to his stomach. Recently he has been complaining of his throat hurting and he has had 2 episodes of respiratory distress they believe the nissen as worked its way loose and he is refluxing again. I hate to put him thru surgery this close to the holidays but I also dont want to spend the holidays in the hospital cause he is sick. He is finally able to eat a lot more by mouth now cause the esaphagus is not having to push the food thru the nissen. It just isnt fair that our little ones have to go thru so much.
Merri

Good luck with everything Merri,

I agree, our little ones do go through so much!

If his nissen came loose and it's causing reflux and aspriation, then I would think he'd gave to get another surgery. I hope it doesn't come to that.

That doesn't sound right about the choking and turning blue just because he has a nissen....never heard of that, but I'm not an expert by any means.

Keep us updated!

Merri, I am sorry it took me so long to find your update. Buddy has been through so much over the years. I was so hopeful that his last surgery would be his last. I hope that they come up with a thorough plan for all of the issues if they have to go back. Please keep us updated and take care. Our thoughts and prayers are with you.

Ellen

Tucker's mom--After they did Buddys nissen that is when they discovered that he has a lazy esaphagus. At least that is what they say. He had no feeding issues prior to the nissen. When they did the first barium swallow (after the nissen) it took over a minute for the barium to pass from the esaphagus to the stomach. They just did another barium swallow last week and there is still a delay but not as long. There is also some reflux going on. They are going to schedule for a bronchoscopy and an endoscopy. Dont know when though. I will keep you posted.

Ellen--I am so glad to hear from you. How are things going with you guys? The doctors have decided to rescope Buddy to see how loose the nissen has become and how bad the reflux is. He has already had H-pylori twice in his lungs from the reflux. H-pylori is a bacteria that is found in the stomach and if not treated it can cause precancerous cells. We definitely dont want that to happen. I will keep you posted.

Merri

Merri- I hope the scope goes well. Please let us know. I know that is what they were looking for when they did Abigail's so it is a good test for that. Abigail is doing well on the GI front. She still vomits but not as much. Mainly she has learned to swallow it (I know, gross). I can hear her doing it but it mostly only occurs with her calorie drink which is super thick so I am not too worried. THis summer she finally started gaining weight consistently so that is a burden lifted,f or now. She has run into some new developmental roadblocks but that is for another day.

Take care,
Ellen