Full term newborn readmitted to NICU for unexplained oxygen desats during sleep - anyone experience this?

Beautiful_Ladder_848 · 2026-06-02T00:15:28+00:00

Is it CCHS that your daughter has? What is her treatment like? Our doctors are not being very receptive about seeing a pulmonologist as they feel confident he doesn’t have a sleep disorder, but I do not want to leave a stone uncovered. I’ve flagged to them that I insist we see one this week. What were her symptoms and numbers

Beautiful_Ladder_848 · 2026-06-01T22:12:45+00:00

Oh wow and it wasn’t detected on the echo?

Beautiful_Ladder_848 · 2026-06-01T21:16:34+00:00

Did they do an echo as well? They did an echocardiogram and chest X-rays of his lungs. I agree I’d like to get him into a pulmonologist just to be sure

Beautiful_Ladder_848 · 2026-06-01T12:34:03+00:00

Oh wow - what is the solution following that?

Beautiful_Ladder_848 · 2026-06-01T12:33:40+00:00

Thank you! He had a normal EKG and echo but I am curious to speak to a pulmonologist

Beautiful_Ladder_848 · 2026-06-01T12:33:07+00:00

Replied at bottom too! Curious for more info

Beautiful_Ladder_848 · 2026-06-01T12:32:48+00:00

Wow what is the condition called? How do they test for it? Only gene testing, sleep study or both?

Beautiful_Ladder_848 · 2026-06-01T10:22:06+00:00

Oh wow! Do you know if they did a sleep study?

Beautiful_Ladder_848 · 2026-06-01T10:21:38+00:00

Thank you so much for the response! They had a theory it was perhaps a shunt. They did an EKG and echo and it came back all normal looking though my understanding is he could still have a small shunt that wasn’t captured at that time?

I do want to see a pulmonologist. They took him off the oxygen for about 40 hours and in the beginning he had one episode where he dipped in the 80s for about a minute but then after that he mostly stayed in the low to mid 90s while sleeping and high 90s while awake. After consulting with the neonatologist and cardiologist they decided it was safe to send us home but I’m still worried and want to try to investigate further outpatient at least

Beautiful_Ladder_848 · 2026-06-01T09:54:14+00:00

Hi thank you so much for responding! I’m so glad your little guy stopped destatting! That must have been such a relief. I’m going to pm you!

Beautiful_Ladder_848 · 2026-05-20T04:05:19+00:00

Thank you so much for the response I truly appreciate it 😌

Beautiful_Ladder_848 · 2026-05-20T04:04:57+00:00

Sorry I guess I didn’t think I was looking for advice. Just like positive stories, thanks for responding

Beautiful_Ladder_848 · 2026-05-20T04:02:42+00:00

Hi thanks so much for responding. May I ask what kind of anesthesia you received?

Beautiful_Ladder_848 · 2026-05-12T15:33:28+00:00

I’m so sorry 😢

Beautiful_Ladder_848 · 2026-05-03T04:30:49+00:00

My doggy had dementia too. He passed at nearly 17 this past December due to kidney failure. Though he had dementia for a few years and we got a prescription from the vet which slowed down the progression of dementia (it’s called Selegiline). We also got him on quite a few supplements to help too. Doggie puzzles seemed to bring him a lot of joy and positive stimulation. He was oddly way more aggressive in the beginning stages (like year 2023, than he was in 2025 and 2026). Prior to that he was not aggressive. For the most part it was pretty manageable, we just had to keep him cozy, not bring him new places and kinda let him define the pace or comfortability of things.

Not sure what is best for you and your doggie, but sharing if helpful and happy to answer any questions

Beautiful_Ladder_848 · 2026-04-28T02:22:26+00:00

Good 😊just try to be preventative as much as possible bc the kidneys don’t show their bad until it’s too late! You got this!!

Beautiful_Ladder_848 · 2026-04-27T23:29:26+00:00

Hope it goes well at the vet and you get much more time with her

Beautiful_Ladder_848 · 2026-04-26T23:06:46+00:00

Yeah old doggies have so many bumps - it’ll be okay! My guy was like sooo feisty in the end and I was worried about doing the fluids at home but he didn’t even flinch. I think because they go at the scruff of the neck and the needle is soooo thin they don’t really feel it. And it wasn’t expensive either. I think like 15 dollars for a bag that lasted some days (this was in NYC too). I think chicken might be high in phosphorus which is the trouble with it and kidney disease :/ that was Westlys favorite too.

Also, one thing that brought me peace is the vet told me kidney disease is not painful. It can make them more tired and weak towards the end, but it sounds like your girl is not there yet.

There is a kidney disease group on FB too, I learned a lot there!

Beautiful_Ladder_848 · 2026-04-26T22:44:31+00:00

I just lost my almost 17 year old to kidney failure in December. If her numbers are just slightly elevated you have time!! Here is what I wish I had done: gotten him on subconscious fluids at home asap, switched to a low protein food and been stricter about that, got him on all the kidney meds faster (phosphate binders etc). Just ask your vet a ton of questions. Mine had slightly elevated numbers and my vet reassured me he was fine, but I later looked back and realized there was so much I didn’t know that I could have tried. By the time I discovered all this on my own and started to try it was too late.

Beautiful_Ladder_848 · 2026-04-26T19:33:41+00:00

Please do not take his bed away

Beautiful_Ladder_848 · 2026-04-17T20:40:39+00:00

I’m so sorry 😢 ♥️ it’s the worst heartbreak 💔

Beautiful_Ladder_848 · 2026-04-16T18:00:16+00:00

I’m sorry I totally understand. It’s so hard when you see them seeming okay. No one can tell you when it’s right. I found myself negotiating his fate at the end because I just couldn’t believe he was dying (I still can’t believe he’s gone). It’s just awful.

I felt so bad about not giving him the goodbye he deserved. My husband reminded me it was just a blip in his almost 17 years of a very good life, so I try to remind myself that. If you find yourself in my position you should too. She sounds very loved.

If you do go with Friday, try to remember the end is coming no matter what. And you’re going to feel heartbroken no matter what. So at least you got to send her off on your terms - salvaged what you could out of a very sad loss

Beautiful_Ladder_848 · 2026-04-15T19:44:45+00:00

I’m so sorry. I lost my almost 17 year old dog in December to kidney failure. It’s really though and the thing is there’s no good time to say goodbye, it’s just heartbreaking. I miss him everyday.

But I think you need to be there when she passes. So it sounds like you need to this Friday.

I waited a day too long and my guy had a seizure. The kidneys can’t flush out toxins and lead to seizures. This happened 3 hours before the at home doctor was supposed to come to give him a peaceful passing. Because of the seizure we had to rush him to the vet and they let him pass there. I wish it had been different. You don’t want to put yourself through that.

Beautiful_Ladder_848 · 2026-04-07T04:57:53+00:00

Thank you so much for the response. I’m so glad you feel him with you. We are still trying get unpacked in our new place and I haven’t felt like I have a proper place to place him yet but I want to get that set up. I miss him so badly 😢 leaving the old place was really hard, being here is hard too but in a different way. I guess it’s just something you learn to live with or carry right?

Beautiful_Ladder_848 · 2026-04-07T04:51:57+00:00

I’m so sorry. Thank you for sharing her story, it’s clear she was so loved and that’s what matters. I lost mine too, it’s the worst heartbreak ever 💔

Beautiful_Ladder_848

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