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Help with Lily’s ICU stay and stroke recovery

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On 5/7/25, my 17-month-old daughter Lily was taking a nap when she began having a seizure. We called 911, but even with prompt attention, the rescue drugs were unsuccessful in stopping her seizures. She was life-flighted to Arkansas Children’s Hospital and eventually there they were able to get her seizing under control. She has undergone a laundry list of tests, including EEG, lumbar puncture, CT, tons of blood tests, and more. It was revealed upon labs that she was severely anemic for which she received a blood transfusion and fluid resuscitation, she also has what appears to be more than one blood clot in her brain. She will undergo an MRI today with sedation and airway management to determine the extent of the blood clots. I will be having to miss work for her hospital stay and we also have 4 other children (including Lily's twin sister Layla). We are over an hour from home and having to drive back and forth, which in itself is extremely difficult and expensive. Even if you cannot donate to help us, just a prayer or well wishes for Lily are so appreciated. She is the absolute sweetest baby, and our hearts are broken watching her suffer through this.

Update for 5/9/25:
We unfortunately did not get good news for Lily. Her MRI shows she suffered a stroke in her parietal lobe and also has multiple blood clots in her superior sagittal sinus and the surrounding vessels are extremely congested putting pressure on her brain. She has been loaded with a seizure medication called keppra and we are waiting on hematology to decide on options for a blood thinner. Since she’s such a hard stick, she may be getting a PICC line also, we aren’t for sure yet. Please continue to pray for her. I can’t describe the feeling of being told your one year old baby has had a stroke, thank you to everyone who has checked on her I appreciate it so much.

UPDATE 5/10/25:
Unfortunately when it rains it pours Lily came to the neuro floor this afternoon and things seemed okay at first but she started seizing again. The first one was short and resolved so we were planning to do EEG overnight and load her with the seizure med again however she went back into a seizure lasting 10+ minutes and needed 2 doses of Ativan to get her out of it. She’s back on the video EEG and feeling okay now that she’s stable. I wouldn’t wish this absolute helplessness and fear on my worst enemy, if I could suffer through all of this for her I would in a heartbeat. I’m trying so hard to stay positive but I’m just feeling really discouraged and scared for what the future holds for lily. Please say a prayer for her all I want is for her to get better and come home

5/12/25:
- Yesterday Lily had a swallow study with fluoroscopy, it showed she is having episodes of aspiration as well as silent aspiration with almost every swallow when drinking. Speech therapy has modified her diet to moderately thickened liquids for the next 6 months and then we will reevaluate. -her levels for her blood thinner looked good yesterday but today are very low again the vascular access team will be down soon because her IV started leaking so she’s going to have to have another one placed. - neurology increased her seizure medicine from 40mg/kg to 60mg/kg this morning so hopefully that will keep any seizures at bay while we continue to get her blood thinners at a good dose.


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    Organizer

    Brittany Moore
    Organizer
    Hot Springs National Park, AR

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