...another diagnosis. Ay yi yi!!! Emerson’s hemoglobin has been dropping all week, which prompted the team to order iron studies, which returned… you guessed it – low. That, in addition to other lab values, has lead the team to the diagnosis of chronic iron deficiency anemia. Why not, right?!? She’s getting a blood transfusion this afternoon & will hopefully, with a few new meds, be able to hold her blood count up on her own afterwards. All in all it’s not a terribly distressing diagnosis & yes, it is (or should be) totally treatable. The discouraging thing, though, is that she seems to be discharging with a new diagnosis every time she comes in. My fear is that the ones to come won’t be so easily treated. That, plus more meds only adds to her already overwhelming schedule.
Otherwise, little Eme has had a rough week. She’s perked up a little today, but has been sleeping pretty consistently since Monday. Her color is awful, her eyes are puffy, sunken, & dark. The increase in oral cortisol wasn’t enough to touch her adrenal needs, so the team started high-dose IV cortisol Monday afternoon. Still, though, her tired body is slow to respond.
Her UTI is resolving, but again we are left managing her Addison's. This is her third admission in a row battling a crisis & again there is no pediatric endocrinologist in sight. She has an out-patient appt scheduled mid-month, but that’s assuming she can actually stay well enough to be at that appointment without his help. So, at the height of my frustration today I called our beloved pedi endo at Denver Children’s (Bradley’s doc) & talked at length to her very nice, helpful nurse. She said she would email Dr. T and try to get Eme in as soon as possible. I told her we could take an appointment as early as next week. My plan, hopefully, is to travel back to Denver for that appointment then start the transfer to home. In all, her issues lately have not been transplant related. Now, in a sense everything is transplant related & all medical intervention has an impact on her new organs, but the things we are battling now require the involvement of other docs… and those other docs are in Denver. I haven’t run this new plan by the team yet, but am hoping they’ll agree!
That’s all for today - I’m really hoping this transfusion will perk her up and maybe we can get out of here this weekend! As usual, though, I never plan too far in advance. Just extra thankful for our week last week…