Its hard to update via the phone because we dont have internet here at the campground! It's still great to have somewhere to stay that is taken care of! We are exhausted from traveling to and from, running around and appointments, so early nights for us!!
Today started fresh and early of 5 AM and a long day at the hospital!
First was labs, HMA & VMA and bone marrow aspirate and biopsies and while she was under they changed her dressing! It was nice to meet another mom of a little girl that we follow! The bone marrow aspirate went ok but Emily had a hard time coming off the propofol again today and was very irritable and crying! The nurse was great and gave Emily a small dose of morphine and that helped take the edge off and calm her! Dr bagatelle was great as well coming by and checking in and everything! We were in recovery a lot longer than expected, then she needed her MIBG injection, get her CT prep and then about an hour talk with the doctor about antibodies! I will talk about that in another post to tell you about it! We finally left the hospital by 4pm exhausted to head back to campground! getting back here by 630 pm, so long 12 hour day is definitely exhausting!
Tomorrow is another long day with her scans and several tests! She said all the results she should have Wednesday so we can meet and talk about those and then head home! The only result that won't be back is the HMA & VMA because that can take 4-7 Days!
Night all send your love, thoughts and prayers for Emily! Clear scans!!!
hey sweet girl. I say prayers for you every day. I check for your updates and love to see your smiling face. stay strong sweet baby girl..so many love you and are praying for you, god bless..love robin from pa
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