ProudMama17
- Apr 19, 2010 5:26 pm
(#93 Total: 171)
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follow up
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.
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esgf
- Apr 22, 2010 12:47 pm
(#94 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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I am keeping my fingers crossed that your daughter will not need surgery again. I will keep thinking happy thoughts.
Take care,
Ellen
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ProudMama17
- May 13, 2010 3:31 pm
(#95 Total: 171)
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Back to Surgery
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.
Replies to this message
Jackie G (May 13, 2010 6:02 pm)
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Jackie G
- May 13, 2010 6:02 pm
(#96 Total: 171)
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Mom to a 25 weeker who is now 8 years old and a 38.5 weeker who is now 6 |
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Replying to:
ProudMama17 (May 13, 2010 3:31 pm)
Back to Surgery: We were back in the hospital the week before last and had all sorts of test run....
Re: Back to Surgery
Definitely will be in my thoughts and prayers! Let us know how it goes.
-Jackie
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tlotfield
- May 14, 2010 5:18 am
(#97 Total: 171)
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Tracheomalacia
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
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esgf
- May 16, 2010 10:06 pm
(#98 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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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
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AydensJourney
- May 18, 2010 5:27 pm
(#99 Total: 171)
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Surgery Every 2 weeks
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!
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alecsmom
- May 21, 2010 5:09 am
(#100 Total: 171)
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Questions on feeding/drinking w/ laryngomalacia
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?
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esgf
- May 21, 2010 1:13 pm
(#101 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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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
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alecsmom
- May 24, 2010 9:03 pm
(#102 Total: 171)
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thanks
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....
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ProudMama17
- May 25, 2010 2:06 am
(#103 Total: 171)
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Update
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!
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esgf
- May 27, 2010 6:40 pm
(#104 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Congratulations on the good outcome!
Keep us updated.
Ellen
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dgallaway
- Aug 26, 2010 2:46 pm
(#105 Total: 171)
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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?
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stacyat
- Aug 27, 2010 1:09 am
(#106 Total: 171)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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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
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7angels
- Oct 23, 2010 6:26 pm
(#107 Total: 171)
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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
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Kathryn:Mom&NICU Nurse
- Oct 23, 2010 6:56 pm
(#108 Total: 171)
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Marina 28w, Emma 36w, Olivia 34w 2 days |
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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!
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tucker'smom
- Oct 23, 2010 10:13 pm
(#109 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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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
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NathansMom13
- Oct 23, 2010 10:22 pm
(#110 Total: 171)
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Come to ShareUnion 2012: It's the BEST weekend ever!!! |
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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
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7angels
- Oct 24, 2010 7:52 pm
(#111 Total: 171)
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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
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tucker'smom
- Nov 11, 2010 2:41 pm
(#112 Total: 171)
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Mom to Tucker (27 weeker, 05/26/06) |
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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!
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esgf
- Nov 11, 2010 5:07 pm
(#113 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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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
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7angels
- Nov 21, 2010 9:43 pm
(#114 Total: 171)
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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
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esgf
- Nov 21, 2010 11:39 pm
(#115 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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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
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7angels
- Dec 10, 2010 4:12 pm
(#116 Total: 171)
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Ellen
Last week they decided to to a sleep study on Buddy. I got the results back yesterday. He is definately refluxing as well as has obstructive sleep apnea to where his O2 sats drop below 90. 3 mins was the longest period of time this happened. It would have to be for 10 mins to need to sleep with oxygen. He has already had his adnoids out and tonsils out so we dont know what the obstruction is. We do know he has nodules in both lungs and esaphagus. They could be getting larger due to the reflux. He is scheduled to see ENT soon. In the meantime the team is going over everything to decide what to do next. Such as a bronchoscopy endoscopy ph probe and lung wash and biopsy. Right now we are at the doctors office again because he might have pnemonia from aspirating the reflux. I will keep you guys posted.
Have a Merry Christmas!
Merri
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7angels
- Dec 10, 2010 4:58 pm
(#117 Total: 171)
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well, the doctor just put buddy on 10 days of augmentin so yes it is a pnemonia. again. YUK!!!
merri
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esgf
- Dec 11, 2010 2:17 pm
(#118 Total: 171)
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Abigail's Mom (29 weeks, 3/21/05) |
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Merri,
I am so sorry he has pneumonia again from the reflux. It is amazing how much havoc acid can reak on your system. One of our graduate students still battles this today. The good news of course is that she is happily married and getting a PhD, the bad news is that she is still undergoing procedures.
I hope the ENT has some ideas about Buddy's apnea. 3 min sounds like a long time to me....
I hope he feels better soon.
Merry Christmas.
Ellen
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7angels
- Dec 18, 2010 9:15 pm
(#119 Total: 171)
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Ellen
Buddy seems to be feeling better. He still has a nasty cough but his o2 sats are doing much better. He sees pulmonology on jan 11th. hopefully we will get some answers then as to what they plan to do for buddy in the near future.
Have A Merry Christmas
Merri
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momofTeagan
- Jan 29, 2011 4:35 am
(#120 Total: 171)
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I have a 9 yr old who at 3 months was diagnosed with a double aortic vascular ring. Had it repaired at 4 months and life has been fun since..hospitalized for respiratory distress poor pft tests but say not asthma just vascular damage kid has chronic croup I have a standing dex order for him!!he is going for a progressive exercise pft test soon he has no exercise tolerance and he was t o outgrow the tracheomalacia by 2!!!..so frustrating as I feel he is poorly managed the kid sounds like a 100 yr old smoker anyone else have similar issues? 
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stacyat
- Jan 29, 2011 6:21 pm
(#121 Total: 171)
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Mom to Emilyn and Hailey (our 20 week angels) and Elim (our 38 week, full term miracle)! |
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I'm so sorry of the breathing problems that Teagan has been having since he was a little guy. I don't have any experience with this but wanted to welcome you to Share! I'm sure other moms will pop in here that have more experience than me.
Stacy
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7angels
- Feb 11, 2011 4:06 pm
(#122 Total: 171)
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MomofTeagan
My son did not have the vascular rings but he did have laryngomalacia and tracheomalacia. They also said that he would outgrow it by age 2. Well he will be 5 next week and he still is at 20% occlusion. Its not very noticable unless he has been playing hard or is sick. Ellen
The doctors have decided to do a ph probe on Buddy. After that they will do the bronchoscopy and endoscopy. Then finally they will redo his nissen which will result in being on the feeding pump 16 hrs a day. Right now he is on the pump 8 hrs at night time. His reflux is really causing some problems with aspirating and erosion even though he is taking 20mg of prilosec 3 times a day. I will keep you guys updated on how things are going. Merri
Happy Valentines Day!!!
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