My baby was born at 24 weeks, intubated for 12 days and has had 3 surgeries all neuro related (reservoir, shunt). He went home from the nicu at 4 months old and had already not been needing any oxygen for awhile. He's now almost 7 months old and had 2 hospital trips both due to GI issues. The first time he was diagnosed with constipation and second time with bad reflux for which he is getting pepcid now. Suddenly, at almost 7 months he started breathing really heavily, retracting and stridor. We immediately brought him in. At first he had no fever but within the next few days he developed one, however he's tested negative for everything. Lung x ray looked FINE. The ENT doctor did a scope with him awake and said he felt that if he took him into the OR he would most likely find subglottic stenosis and he would have to do the trach. I was literally shocked. My baby was breathing fine a few days prior! Weve now been here a week still having fevers and still slight retractions and slight stridor. He's on 5 liters high flow 21%. Again at home he needed no oxygen and was having none of these symptoms. I'm fighting to get him transported so we can get a second opinion. We are in Mobile, AL. Does anyone have any advice on what I should do? Did anyone else have their baby suddenly need a trach? Could this just be caused by an unknown virus? Other than his shunt my baby has been relatively healthy and strong for being born so early. I love his little babbles and voice and this is breaking my heart. Im praying for another way. I need advice please
@biblestudy That's how I feel. The ENT has extremely good recommendations and he is very nice, but he has been practicing for 50 years, yes 50! And I think he does things a little more old fashioned. Like if it's possible the airway is narrowing, just go ahead and give them a trach type of thing. Also he works with all ages in peds so I think he sees a former 24 weeker and assumes that this has to be a chronic issue. As I said, it hasn't been. Maybe it's a virus, idk but it's not something that has been there and slowly got worse it's something that came on very suddenly.
I'm praying we can get him transferred out of state so we can get a good second opinion.
@stereodanny Have you talked to a pulmonologist? When our LO was dealing with really bad reflux, it was irritating his throat and causing inflammation and stridor. We had an inhaler that we gave him 2x per day that resolved it and had albuterol on hand should he ever need it (luckily he didn’t)
@lorien The pulmonologist here said he thinks it is a virus that is causing extra inflammation and the stridor to sound worse. He tested negative for all the viruses and bacterial infections they tested for (biofire) but it could still be something. I don't know if I brought up the reflux to the pulmonologist though so I definitely will. The hospital team here is really bad about communicating between specialties. Thank you for the information!!
@kirkwood They told me his lungs were fine they are more concerned with just the airway. However they only did a chest xray, not CT and they have not done any imaging of the airway specifically. I'm trying really hard to get him transferred
@stereodanny When they did x rays for my daughter it showed noooothing. As soon as she had the CT it was clear she had interstitial lung disease. I would 100% be pushing for a CT and a transfer at this point! So many prayers to you and your baby!!
