06/05/2024
From Alyse Fricke yesterday….please pray extra hard for our precious Jasper Reed🥺♥️❤️🩹
Day 90.
My sweet, sweet Jasper. He had some good dreams that made him smile, and he had some snuggles with Mama today.
Yesterday was hard. Even though I knew overall what to expect, it's easy to pretend otherwise when you don't have to face it. But I did. It was me , Dr Stone, Dr Kays, the charge nurse, the bedside nurse, the social worker, and palliative care. Dr Kays started by saying how much they love Jasper and how much I've grown on them and impress them with my dedication and love for Jasper. They want nothing more than for him to make it. But the reality is he has been on ecmo an extremely long time, and we have not seen much improvement on his lungs at all. We don't know if it's a series of unfortunate circumstance or if it's a physiology issue.
The question is- how long do we keep doing this. And are we doing things that are potentially helping him or are we prolonging his death.
Dr Kays proposed that we give it 2 weeks. 2 weeks where he will try different steroids, different diuretics, do another bronchoscopy, consult some other specialties, and overall let him rest.
We will meet again in 2 weeks and talk about if we've made any progress at all and discuss plans.
My heart hurts. I'm praying harder than ever for a miracle, for answers, for hope.
I've been living a nightmare non stop for 210 days, since the day I found out about his diagnosis, and my absolute worst fear is being discussed as a reality.
Please, God , have mercy on me and my baby. We've been through so much.😞