My son was diagnosed with subglottic stenosis today after having a broncoscopy. He was on a cannula for about 41/2 hours but could not maintain it. Has anyone dealt with this. What was done to get the baby off the vent? What can I expect now, surgery a trach.
Anything will help. Thanks
My daughter also had subglotic stenosis which was found during a bronchoscopy. We waited until she was 1500g to have the bronc and right after the bronc, the surgeon immediately did a cricoid split to open her airway. Then he put in a larger ET tube and she was immobalized for 10 days. After that, they took out the tube and her stitches. She was stable on O2 in her isollete and then she went to vapotherm about 24 hours later. She was very hoarse and did not have a normal cry...she still doesn't have a normal cry and she is now 1 year old as of yesterday! We were told that the worst case senario would be a trach. Make sure you ask your doctors all of your questions and remember they can't do anything without your consent. Good luck, feel free to contact me if you want to talk.
Ginger
Thank you. We are having a cricoid split done on Monday. I am a little scared this will be his 6th surgery and I just hope he does'nt have to come out with a trach. I just get so frustrated because I dont know what the outcome will be. Again, thank you.
It will be hard to see him immobilized (about 10 days), but it is important after the surgery to not move his head so that the new ET tube doesn't come out. His airway will need time to heal around the larger ET tube so it will be more open when the tube is removed. We put a big sign by Addison's isolette that said "Do not move head of bed or ET tube." My husband and I will be praying for your little guy and for your family. Let's pray that this will work and he will come off the vent for good!
Ginger
I was thinking of you and wondering how Jacob's surgery went?
I just responded to your ? about feeding. I did'nt realize that was you. He has done well , they took him off the paralytic a few days ago he is still heavily sedated and will be until at least Sunday. We go in Monday to see how he will do. We have'nt had any issues with it so far and he has been pretty low on oxygen so we will just have to wait. I pray that this works because I really dont want him to have to have a trach I have heard his little cry just once over the last four months and dont want to imagine not being able to hear him for at least a year. We have everyone praying that this will work. Thank you for your prayers and concern...I am so tired of being in the hospital and so ready for him to be home.
My daughter is a 32 weeker didn;t have this exact issue, but she did have an airway issue, among other things that required 6 surgeries and she spent 112 days between 2 hospitals before she first came home. I feel for you and what you are going through. To say that it is not easy would be a laughable understatement. Hang in there-at some point Jacob will be home and be able to hold that adorable little boy as much as you want. Try to visualize that as much as you can. I wish I could offer something more comforting. I will add your family to my prayers.
Addison was extubated 11 days after cricoid split. She was 11 wks (35 wks gestation). She was on O2 in isolette only for about 24 hours. The nurses had said that she would probably do well for the first day (the honeymoon period) and then show her true colors. So don't be surprised if Jacob seems to take a step backwards. Then she went on Vapotherm (nasal cannula with some pressure with O2). The doctors wanted her off vapo and on regular nasal cannula to start bottles. Also during her 11 days of immobility, she had atelectisis on her right lung (a little collapsed). About a week and a half after extubation, Addison was off vapo and on nasal cannula with O2 so she started bottles and stopped her caffeine (she'd had this since birth). She was having some apneas and desats while eating, so a little over a week later, she had a swallow study and that showed she was aspirating her food and needed it thickened to honey. She was also put back on caffeine and actually came home on caffeine for a few months. She struggled with her bottles because the food was so thick (sludge as the nurses called it) and she needed to work really hard. She came home 8 days past her due date and had been taking all 8 bottles in NICU for a few days so they took out her NG. She was on room air except while eating, she had nasal cannula. But after 1 day at home she had 2 bad feeds and I had to put NG back in. It took her a week to adjust to being home. She was finishing 2 bottles a day and we were NGing the rest. When she was 7 weeks adjusted, she had another swallow study, went to nectar consistency and took out NG. Then she finished every bottle! After she was extubated, she did cry but she was very hoarse so you couldn't hear much unless you were really close to her. The surgeon had said that her vocal cords were fine, but as she gets bigger, her airway will grow and she'll sound better. But it could take a couple months or a couple years before she sounds "normal." Now that she is 9 mo adjusted, she does babble and has the sweetest little voice. But when she cries she is still very hoarse because she uses all her energy to cry and not much noise comes out, just a lot of tears. I know when she is crying because I know what to listen for, but other people don't know that she is crying when they hear her. I'm sorry this was so long, but I have my journal here in front of me and wanted to let you know what our experience was. Your's probably won't be the same, but I pray that Jacob will be able to come of the vent and not have to go back on.
Ginger
thank you so much....we cant wait to see what will happen on Monday...he has weaned down to 20 on the vent so hopefully he will have no more issues and be able to do this on his own...thank you for your support we will keep you updated.
Hello,
I've never heard the term "subglottic stenosis" before, but when I started reading the posts I became very interested. Is this condition the same as narrowing in the throat? My Megan had a hard time coming off oxygen and every time she gets sick she gets really wheezy, also she never had a real cry. Just like Addison she would do the big inhale and no noisy scream follows. I would sometimes forget to tell people that she didn't have a noisy cry and several people wouldn't know she was ever upset until they saw tears streaming down her face. I've been bringing up this issue to doctors for a long time. Nobody seemed concerned but we finally had a brochoscopy done when she got her tonsils out a few months ago. They reported that she had two spots of narrowing, but I never recieved an offical report and so I was wondering if this is the same diagonisis as you guys had only not as severe. The said they'd only do something for her if she continued to have trouble sleeping. I'm hoping she'll grow out of it as her voice seems to be stronger now that she is two and a half. She almost has a cry now. I guess I don't really have a question and I can't offer any help because we never had the surgery, I just wanted to share what my daughter has, in case it's remotely the same. I was confused when a month ago I brought home a foster preemie (25 weeker) and his cry was huge and loud! He seems to have faired much better than Megan despite being earlier.
Elise
Subglottic stenosis is a narrowing of the subglottic airway which is the narrowest part of the airway and located in the cricoid cartilage. When a preemie is intubated with ET tube for a long period of time, it can cause swelling or damage to the airway.
When my daughter was extubated, she had significant stridor. The doctor tried steroids in case it was caused by swelling from the ET tube...my babies pulled their tubes out often! The steroids didn't work, so a bronchoscopy was done and showed 50% narrowing of her airway in the subglottic airway, hence the diagnosis. That's why she had a cricoid split to open up her airway.
After her surgery, she still had some stridor, but much better than before, and deep retractions in her chest as she breathed. But as she has grown, her stridor is minimal and only noticable if she is upset and her chest looks normal when she breathes.
Any surgery that deals with respritory issues is always stressful and worrisome, but just pray and trust God to take care of your baby.
Was Jacob extubated and how did he do?
Ginger
YES!!!!!!!!! He was extubated on the 21st he was put on NCPAP for two days and then on room air! He is a little congested but doing wonderful except that we found out on Thursday that he is going to have his gallbladder removed he has developed gallstones. We go in Monday at 2:30 for that he will have to be re-intubated for that I am really nervous about that but the surgeon said he should come off shortly after the surgery. They are also going to put in a g-button because he is having some trouble swallowing and they dont want him to have to stay in the hosp. just to learn to bottle feed we can work on it at home. They said he will learn to bottle feed it is just going to take some time. Hopefully if ll goes well we should be coming home under 2 weeks....I cant wait.
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