Home sweet home! Shes still very sick, no doubt. Increased - TopicsExpress

Home sweet home! Shes still very sick, no doubt. Increased meds, found a bacterial infection this time. Im sorry...I had EVERY intention of writing a detailed post the other night but sleep won out, especially since I took the night time one. I will be doing it tonight :-) However... After many conversations with the doctors and our personal take on the situation, we opted to bring her home to treat her while she recovers. We cant risk her getting something else and this may just continue to linger if so. As soon as we got home today, I took her into the bathroom for a bath. Biggest brother captured her joy at being home! Priceless picture for us because she has not felt like smiling in the least in days! I will treasure this picture especially! (Im sick still, hence the mask.) Okay, a HUGE shout out to our girl, Sarah!! This picture was taken last Friday on our discharge. She has been our PICU nurse at some point on every admission and GET THIS...she has volunteered to be with us when shes seen our name on the list! Once when we were admitted via ER while she was working, she spoke up and claimed E right away AND got our room ready the exact way she remembered we liked it! NO JOKE! She had the crib taken out and a bed put in, stocked the drawers with size 1 diapers, put my pump and an extra chair in the room, got mouth care swabbettes we use for her, etc. etc. What a way to make someone feel special and welcome during such a not so great time! We love her just as much as she loves us...or maybe just Everly...but either way, THANK YOU, SARAH! If you will continue to pray for our little miracle! Pray for her congestion to clear up quickly as her body is so tired, pray for her heart and PH balance to hold steady right now, pray for her new infection and the old rhino to be cleared from her body COMPLETELY. Its been a LONG 2 months for her and she needs a BREAK!! Hugs and kisses for all the prayers and messages, especially this time!! Scariest moments weve had yet. Also, thank you for the meals and gift cards for meals as they have been such a HUGE blessing to our already stressed and maxed out family! And, now home and taking care of E with her many around the clock meds doses, treatments and such while she recovers, the free time we have will be spent with my boys. So THANK YOU ALL!!

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