Summary of post if you don’t want to read the whole thing...Ellie was admitted to Primary Children’s ICU last night for an antibiotic resistant pneumonia. She is stable. She has been started on IV antibiotics. We are hoping to be home by Christmas. We would love prayers.
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History for the last few months
She has been fighting a L ear infection for months. We do ear drops, it clears up, then it returns.
She has been drooling for the last several months.
Her breathing has been junky for the last several months, but she has maintained her oxygen saturation’s the whole time.
She has had blood tinged sputum ( junk coughed up from lungs) for the last few months. ( more about this below)
Her hands, feet and belly have been swollen/bloated even worse than normal for the last few months.
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Things we have tried for the bloody sputum...
Ear drops
In March we had switched from Zantac ( due to it being recalled) to famotadine. These are reflux meds. She started bleeding a few months after switching, so we thought it might be reflux making her bleed. So we doubled her dose of famotadine. It did not help with the bleeding.
I talked to her pulmonologist about her being more junky and the bloody sputum. She called in a chest X-ray and wants us to collect a sputum sample. We started on oral ciprofloxacin ( more on this below).
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Results of the chest X-ray/Sputum...
Chest X-ray showed pneumonia in lower right lube ( bottom part of her right lung)
Sputum grew serrations marcescens and rare pseudomonas. The serrations was susceptible (meaning it would be killed by) to cipro. The pseudomonas was resistant ( would not be killed by anything) except colistin out of the antibiotics they tested on it.
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What we did about the pneumonia
Her pulmonologist felt confident that cipro could take care of the serratia. Pseudomonas is extremely difficult to eradicate. Usually you just hope to make it retreat a bit until it comes roaring back.
So we started on oral ( which for Ellie means gtube) ciprofloxacin antibiotics.
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Sunday and Monday
Yesterday ( Monday) was day 11 of cipro and day 7 of ear drops.
She had not improved.
Sunday and Monday she was actually worse. She needed 3 liters of o2 up from 1 liter and she still had bloody sputum. Her lungs sounded more junky.
Sunday her left eye was dilated.
Sunday and Monday she woke up and her left eye was swollen.
She was super snotty ( upper airway).
She normally gets a vibrating vest and 2 inhaled meds to keep her lungs clear. On Sunday and Monday I increased her breathing treatments to 4x per day.
I called pulmonology and asked if there was anything else we could do at home. She said no, we should go to Primary Children’s Emergency Room.
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She was not in a super dangerous place, so Monday we waited until Jason got home from work before I (Mikael) drove her to PCH Emergency Department.
In the ED they ran blood, blood cultures, urine, urine cultures, chest X-ray, abdominal X-ray, covid, snot.
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Test results
No covid. No virus ( out of the ones they check for).
Chest X-ray looked unchanged from 2 weeks ago...still had pneumonia.
Her hemoglobin was low, but not quite low enough for a transfusion, but almost.
Co2 was high. So she was not breathing out all of the co2 that she should.
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actions taken after test results
They put her on her bipap to help blow off the co2. Anytime you are on a different bipap setting or time frame you have to be in the ICU. So since they put her bipap on before bedtime, she needed to go to ICU.
Her temp also dropped to 89 F while in the ED, so we took a few hours to get her warmed up with the bear hugger and warmed IV fluids.
Admitted to ICU. Got into a room at 1 AM.
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How the night went
She was stable all night.
She dropped o2 sats into the 70’s a few times. But after being suctioned her sats came back up.
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The plan
Her previous sputum was resistant to everything but colistin. We have been in this situation before several years ago, another time that pseudomonas reared it’s ugly head. The dr’s several years ago said colistin was too dangerous. So several years ago we used avycaz . It is an uncommon combo of 2 IV antibiotics.
The ICU dr’s can only prescribe the common antibiotics, once they get resistant bugs, they have to call in Infectious Disease ( ID). I jokingly call them the CDA ( from Monsters Inc).
Overnight they were able to get in touch with ID. ID wanted to do avycaz and vancomycin. So those are already started this morning. I am surprised how quickly that happened.
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Tests run today
Hemoglobin was even lower today than last night and hematocrit was low as well. So she got a unit of blood ( blood transfusion) this morning.
Another sputum sample.
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New symptom
Her palms are red and dry this morning. Possible reaction to blood or antibiotics????
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Overall
Overall she is doing good. Fairly stable. We are hoping to make it home by Christmas, please include Ellie and her Dr’s in your prayers.
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1 comment:
🎵“I’m praying, you’ll be home, for Christmas...”🎶 (aren’t those the words?) Love you Ellie, Mikael and Stansfield family! 🤍
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