We were discharged from hospital on Sunday. "Croup" said one doctor, "Chest infection but probably not but maybe and let's treat it as though it is even though it most likely isn't" said another.
The discharge letter came through today "Upper Airway Obstruction secondary to Cerebral Palsy." Apparently she was admitted with "Coryzal symptoms" , which my google-fu translates as "common cold". So far, so unremarkable. Needed oxygen. No news there either. The letter indicates she was initially treated with a Budesonide nebuliser. News to me; I guess they must have done that after I had left her. No mention, oddly enough, of the saline nose drops one doctor insisted would cure her if we just squirted them up her nostrils every 10-15 minutes. And then a list of other treatments they'd given her, including the transfer over to HDU. And one little sentence, buried in amongst it all. "She had apnoeic episodes and had an episode of complete obstruction lasting two minutes."
Two minutes? She stopped breathing for two minutes? Was this not something it might have been considered appropriate to mention to me at some point? Apparently, after this, she continued to have "occasional desaturations at night which responded to oxygen." And then they discharged her with a recommendation for a saturation monitor.
Well that's great. We've got the monitor. Now I have warnings of her "Occasional desaturations" and get to poke and prod her until she rouses up out of her deep sleep enough to take a deeper breath. I wonder how often they have to happen before occasional becomes regular or frequent? And I wonder how she's supposed get a proper night's sleep if we have to keep poking her to get her breathing properly?
And I wonder what happens next time she gets a cold?
Tia
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6 comments:
Hi, Tia.
I also have Cerebral Palsy,but not to the extent that Miss Mog has. Is it possible that her desatting has to do with pain? I drop below 85 if I'm hurting enough...
Surprises in the discharge letter are *never* good.
Ashley
Would using a cpap be of use. At least then in theory you wouldn't need to keep poking her to keep her O2 sats up.
Wow. You think they would have mentioned some of that to you...
Sort of makes me wonder if they have the right discharge papers with the right child?
Any mention of her having O2 during the night?
Janaea is okay now during the day without O2 but still needs it at night--
Maybe just to help her out while she is sleeping--especially when she gets a cold or cough or any respitory gunk.
Debra
celyn has desats down to high 70's maybe once every 2 or 3 nights. No cause found although one doc suggested she stops breating and if we didn't have the monitor she would 'die peacefully'. Ahem.
But the monitor makes me rest more easily.
Praying all is well.
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