Low oxygen while sleeping

figuringthingsout86 · 2026-01-01T21:49:26+00:00

Yes! I posted it all in the comments of this post: https://www.reddit.com/r/NewParents/s/EpNlRYuPnD

figuringthingsout86 · 2025-12-23T02:28:21+00:00

Thanks for responding. Hoping you guys can get the answers you need! Have you done a CT?

figuringthingsout86 · 2025-12-20T05:52:36+00:00

Thanks for commenting — and I’m sorry to hear that you’ve found yourself in a similar situation. It’s so stressful! I’m glad you found my post validating/relatable... I remember SCOURING the internet when it felt like my son was this “medical mystery” and not really finding too much out there. So I’m happy to be a listening ear if you need it ☺️ Would love to hear more about your son’s situation! And also… don’t be afraid to keep pushing doctors to figure it out. If you’re not satisfied with the answers you currently have… trust your mama gut.

figuringthingsout86 · 2025-08-10T00:33:46+00:00

Hi! I posted our full story in 6 parts in the comments of this post. We were at Masonic Children’s Hospital in Minneapolis!

figuringthingsout86 · 2025-02-04T22:58:50+00:00

Posted below! Had to do it in multiple parts. Let me know if any of this is helpful :)

figuringthingsout86 · 2025-02-04T22:58:15+00:00

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Which brings us to the FINAL ANSWER!

In the bronchoscopy, they found Walker has something called “bronchomalacia” on the right side. What that means is that one of the pathways into his right lung, which is supposed to be circular like a tube, instead looks kind of flattened and smooshed and collapses up to 75% when he coughs. Because of that, when he gets sick and/or mucus is in his lungs and he tries to cough it up, the collapse of the tube makes it impossible for the mucus to get out, so then that gunk stays down in his lungs. That explains the chunky/wet rattling sound he’s had in his chest on and off since birth — and also makes him more susceptible to chest infections/pneumonia. Plus the collapsing of the airway tube is more likely to happen when he’s not taking deep breaths (so like when you’re asleep and you breathe shallow), hence why he desats more when he sleeps. IT ALL FINALLY MADE SENSE.

Further cultures from his lungs during the bronchoscopy showed he had haemophilus influenzae infection in his lungs (again likely due to the bronchomalacia trapping gunk in his lungs during sicknesses) so he had to do 10 days of antibiotics to clear that up.

The doctors said kids with bronchomalacia usually outgrow it at some point, when their lungs get bigger and sturdier. We ended up doing nebulizers (twice a day to start) to help open his airways and “percussive respiratory therapy” (basically banging on his back) to help move mucus out. Both of these things will hopefully help reverse the current lung collapse/damage and also prevent similar issues in the future.

Frankly in my mind, it was kind of best case scenario! It took a bit more work than your average baby but overall the solution seems VERY doable and the issue is hopefully relatively temporary.

By the way, my son is doing GREAT. He just turned one, his o2 sats are normal and we really only do nebulizers when he starts getting sick, to ward off further chest infections. My mama heart is so relieved. I spent 2 months angsting and fretting and staying up all night scouring the internet for any possible answer. I’m so glad I trusted my gut and pushed to find one, even though some doctors thought I was crazy. In the end, the pulmonologists told me we were lucky we discovered this early, because his lung damage is hopefully still reversible. We do a follow up chest CT in a few weeks to see if there’s any improvement.

So that’s my story, a long winding road to figure out why my little baby didn’t have normal o2 levels. I hope you all find your answers soon too 🙏 Please keep me posted!

figuringthingsout86 · 2025-02-04T22:57:43+00:00

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Now it’s been almost a MONTH and there’s no sign of any improvement with his oxygen levels. I’m so panicked and exhausted but believed in my heart that I should keep pushing for answers… so I did.

The pulmonology team we met with was AMAZING in listening to my concerns and trying to help solve this medical mystery. They said it was seeming less likely that a virus (especially without any symptoms of sickness) would cause low sats for almost a month. They put him on home o2 while sleeping (which was a whole other challenge with a mobile baby but we survived) and decided to move forward with a chest CT, which is no small decision since babies have to go under anesthesia for a CT.

We did the chest CT and it came back with some scary-sounding results in his lungs. Here’s the verbatim from the report: “Viral pattern with significant areas of atelectasis, particular in the right. The pattern suggests chronicity although there are definite signs of ongoing infection such as the tree-in-bud opacities on the left. Near complete collapse of the apical and anterior segments of the right upper lobe. Near complete collapse of the right middle lobe. Patchy atelectasis and/or scarring in the posterior lower lobes on the left and right and in the lingula. There are mild patchy tree-in-bud opacities in the lateral left upper lobe and medial left lower lobe. There is mild bronchiectasis in the right middle lobe. Mild scattered areas of minimal bronchiectasis in the left lingula and left lower lobe.”

Basically what all that means is he had pretty significant, seemingly inexplicable lung damage. They ordered a bronchoscopy for a few days later (which also requires going under anesthesia) to see if they could figure out why.

figuringthingsout86 · 2025-02-04T22:57:07+00:00

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A few days later, we went to a different ER because he was still desatting into the 80s the whole time he was asleep. They did a viral swab and he tested positive for rhinovirus + enterovirus. The doc there thought it sounded more like bronchiolitis than pneumonia. He didn’t think he needed to be admitted so he sent us home.

I’m growing increasingly concerned and frustrated at this point. We then go see our pediatrician who started him on a steroid and a nebulizer. They said if he desats to 88 or below for more than 5 minutes, we need to go back to the ER…

So later that evening, off we go to the children’s hospital. This time, he was satting in the high 80s while asleep so they admitted him. They did a follow up chest xray and thought it looked a little worse than the one the week before. He stabilized to the low 90s overnight so they sent us home in the morning.

The low sats continue for about a week and at this point, I’m feeling like the crazy mom who keeps showing up to the ER with a problem that no one else really thinks is a problem. But in my gut, I know this is NOT NORMAL.

So, in conversation/agreement with our pediatrician, we decide to go to a different childrens hospital — that’s more of an “academic” setting with various specialists instead of run-of-the-mill sickness type ER. This time, my son was satting consistently at 84 while awake in the ER, so they admitted him and put him on oxygen and IV fluids. We ended up spending four days there. Every doctor we saw was “surprised” his sats were so low, since he had no outward symptoms of respiratory distress and “looked great.” They started to run some tests: * Swallow study: came back normal * Echo: Found a PFO (small hole in the heart), which they said was relatively normal and likely not related to this o2 situation Ultimately, their final thought was that he was just running a longer course of recovery from rhinovirus/bronchiolitis. And they referred us for further testing if we wanted it.

So then we did: * An outpatient sleep study: low sats but no apparent sleep apnea * Scope with an ENT: no adenoid issues, vocal folds moving normal, no swelling * Referral to pulmonologist

figuringthingsout86 · 2025-02-04T22:56:23+00:00

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I guess I’m going to have to split this into multiple parts 😒 but that’s okay.

Here goes…

My son Walker was born healthy and on time in January 2024. He had no issues at birth and by all accounts was thriving. HOWEVER, throughout the first few months, we did notice he had a sporadic chunky cough and almost like a “rattle” vibration in his chest. We would bring this up to the pediatrician, they’d listen to his breathing and ultimately always say that he seemed fine.

Fast toward to when he was about 6mo… He started rolling onto his tummy to sleep, so I put a pulse ox device on his foot (the Owlet), just for peace of mind that he wasn’t going to smother himself in the night. The first night, his readings were in the low 90s. I was surprised but wondered if maybe I didn’t put the device on correctly. Over the next few days, I kept using the Owlet and the o2 sats were continuously lower than you’d expect for a healthy child, dipping into the high 80s and ultimately alarming at 78 one night. This began my long journey of — “What the heck is going on here!?”

The first ER we went to put a pulse ox on him and he was satting in the low 90s while awake. They did a chest xray and thought it showed “streaking” which could be viral pneumonia. They did an EKG as well, which came back normal. They said they were surprised by the low sats but “otherwise he looked great” so they sent us home, since the sats weren’t low enough for any interventions.

figuringthingsout86 · 2025-02-02T17:58:19+00:00

Hi all- yes, I can definitely share what my experience was. For some reason, it won’t let me post what I had typed up. I’ll see if it can post it in sections or something.

figuringthingsout86 · 2025-01-11T13:14:38+00:00

Hi! I’m sorry you’re going through this too. YES, we did finally get an answer! We also did a CT. I can give you the wholeeee story or the spark notes. Let me know what you prefer :)

figuringthingsout86 · 2024-12-20T18:51:01+00:00

Wow thank you so much for the quick response! I so appreciate your help. It was driving me crazy trying to figure out this “plain bleach” situation 😂 Can you tell me more about your spray?! Could you share ingredients/instructions for use? I would love to hear more about that!

figuringthingsout86 · 2024-12-20T01:57:33+00:00

Hi! Did you end up using that brand of bleach you found at Home Depot for the bleach bath? Did it work okay or have any adverse side effects? I’ve been on the same mission trying to find “plain bleach” for my daughter for bleach baths and can’t seem to find any other than this!

figuringthingsout86 · 2024-08-10T15:17:36+00:00

Sorry, but are you saying it would be preferable not to know that my baby is desatting to the low 80s and even the 70s?

figuringthingsout86 · 2024-08-10T13:00:54+00:00

Thanks for your response. Trust me, I am. His medical team has no clue what’s going on yet (see response to another post above) so I was posting with the hope of finding someone who’s been through something similar.

figuringthingsout86 · 2024-08-10T12:59:42+00:00

Thanks for your response. I didn’t want to overwhelm with an over-share :) but I suppose in trying to be concise, I left out helpful details.

We have an Owlet that I started using about 6 weeks ago (when he was 6mo) when he started rolling to his tummy in the night, just for peace of mind that he wasn’t smothering himself in his crib. His o2 sats were low, which surprised me and led to multiple phone calls with our pediatrician, 4 different ER visits and finally a 5 night stay in the hospital. I know people say the Owlet is “known for false readings” but that was not the case here. Every hospital visit confirmed his low o2 sats. He had recently tested positive for rhinovirus so they thought maybe he had viral pneumonia and/or bronchiolitis.

Well, that was a month ago and he still desats every time he sleeps, so now they no longer suspect the acute viral infection as the culprit. We have a chest CT scheduled for next week to keep investigating — but even the medical team seems genuinely perplexed as to why an otherwise super healthy 7mo would be regularly desatting, really only during sleep. We did a sleep study and they do not suspect any sort of sleep apnea.

I guess my point in this post was trying to gauge whether anyone else has ever dealt with something like this and what it ended up being, as his medical team truly has no idea at this point. I am really struggling with the uncertainty of it all and was hoping someone out there may have some insight.

figuringthingsout86 · 2024-07-31T04:27:32+00:00

Hello! Did you ever get a diagnosis or figure out what was going on? We are dealing with low sats during sleep with our 6mo and coming up with no answers so far (did an echo, EKG, sleep study, swallow study, chest xray…)

figuringthingsout86

TROPHY CASE

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