ellaslittlesteps hashtag performance
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495.7k
Just had lunch and now it’s nap time ♥️ spending this snow day inside all warm and cozy! Ella’s surgery is still a go for next month pray for no infections 🙏🏼 #ellaslittlesteps #ostomyawareness #raredisease #STARsyndrome #fory #babytok #10secondchallenge #warrior #kidneydisease
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At OU children’s hospital we’ve been from the ER, 7th, 8th, 9th and now 10th floor stays. We’ve had nurses we absolutely love and still stay in contact with and some we have different opinions. Most nurses know us here at children’s. But because of past experiences with either newly nurses or training nurses with Ella’s medical conditions we would prefer someone who knows what they are doing. When the nurse comes in and just looks at the IV site and does not feel it I knew something was up. When she asked “how would you like me to flush this before the antibiotics” I knew something was up. When she tried to flush it and did not check if it was soft or not leaking or if the skin was white I knew something was off. I offered to turn on the lights, she said no it was fine. She tried to flush it and Ella immediately started screaming. I told her to stop. She said “I’m going to try again” I turned on the lights on noticed it was leaking out from the bandages. She still continued to try to flush. Again Ella cries in pain. She said “oh it is leaking let me try once more” before I could say that’s enough she pushed again I told her it’s time to take this out now. She removed the IV to find Ella’s arm completely swollen still leaking liquids. She gave us hot pads and left. That was at 12:30 last night. She came in at 6am this morning telling us they low on Pedialyte but it was shift change so she was leaving. That was it. No checking her arm, making sure the swelling went down, no is she okay, how is she doing? I’m completely baffled because when we had an IV incident last year every nurse on the floor checked in with us to make sure she was okay. Charge nurse and risk management has been contacted but this needs to bring awareness to inpatient care. #ellaslittlesteps #fyp #kidneydisease #warrior #infiltratediv
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Last night we didn’t get a chance to tell everyone bye & thank you on TikTok because we were in the ER but we woke up to TikTok back and we couldn’t be more grateful because this is our biggest platform to spread the word about Ella’s rare conditions♥️ our sweet girl caught Flu type A 🤟🏼 #fyp #ellaslittlesteps #ostomyawareness #ostomypositivity #raredisease #STARsyndrome #10secondchallenge #kidneydisease #fluA #fory #urostomy
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Hang out with Ella while we try to figure out this 360 motion camera stand we were gifted for Christmas! The count down is on for Surgery 🤞🏼 #fyp #ellaslittlesteps #ostomyawareness #ostomypositivity #raredisease #STARsyndrome #10secondchallenge #kidneydisease #urostomy #warrior
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Thank you guys so much so much for the continued prayers♥️ #fyp #ellaslittlesteps #ostomyawareness #raredisease #kidneydisease #STARsyndrome #fory #babytok
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We aren’t taking any chances taking Ella outside with the weather as cold as it is and snowing so snow day inside! Gotta keep ella as healthy as possible for surgery ♥️ Ella’s first snow day ❄️☃️♥️ #ellaslittlesteps #ostomyawareness #raredisease #STARsyndrome #fory #babytok #snowday #10secondchallenge #kidneydisease
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Our Ella girl is such a warrior, everyday she amazes me❤️ please lord watch over my baby 🙏🏼 #ellaslittlesteps #kidneydisease #fyp #warrior #STARsyndrome #ostomyawareness #10secondchallenge #raredisease #surgerytiktok
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Ella was admitted back into the hospital yesterday after battling Flu A the last 8 days to now find out she has another kidney infection with multiple growing organisms. They have started her on meropenem and IV fluids. Praying it doesn’t damage her kidneys more 🙏🏼 stay for 10 seconds ♥️#fyp #ellaslittlesteps #ostomyawareness #kidneydisease #raredisease #STARsyndrome #10secondchallenge #urostomy #warrior
10.3k
We don’t always get to hang out outside but when we do we have to gather all the sticks and wave it around like Harry Potter 🤣 we finally got a call from surgey scheduling today for next month!! #fyp #ellaslittlesteps #ostomyawareness #ostomypositivity #raredisease #raredisease #STARsyndrome #10secondchallenge #kidneydisease #urostomy #fory #
10.2k
Trust me your not gonna miss Ella’s baking class! Come hang out with us ♥️ #ellaslittlesteps #ostomyawareness #raredisease #STARsyndrome #fory #babytok #10secondchallenge #baking
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Baking class with Ella 101 ♥️ come hang out with our Ella girl, we less then a month away from reconstructive surgery 🤞🏼 #ellaslittlesteps #ostomyawareness #raredisease #STARsyndrome #fory #babytok #10secondchallenge #baking #ella
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We’re waiting on test results that could explain why Ella has been so sick recently 🤞🏼 fingers crossed for the best possible outcome and answers ♥️ we should know by tomorrow #ellaslittlesteps #kidneydisease #fyp #warrior #STARsyndrome #ostomyawareness #10secondchallenge
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I had to call the ambulance earlier to come help Ella she was gushing blood out of her stoma (ostomy site) it hasn’t stopped we are in the ER waiting on ultrasounds/X rays . Last week when I kept trying to get figure out why she was having blood in her stool and no one listened to me. I pray to god we find out answers asap. Ella is stable and alert. She is a tough girl. #ellaslittlesteps #kidneydisease #fyp #warrior #STARsyndrome #ostomyawareness #10secondchallenge #surgerytiktok
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Ella doesn’t go anywhere or sleep with out her Ms.Rachel 🫶🏼 @MS.RACHEL... 🤍 #ellaslittlesteps #kidneydisease #fyp #warrior #STARsyndrome #STARsyndrome #ostomyawareness #10secondchallenge #surgerytiktok #msrachel
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