Back on Milrinone…*Updated*
Dr K just came in and said that the cardiologist that prescribed the Milrinone didnt know Emma, and was just going by her BNP numbers… Hers are always high because of her Coronary Artery Disease. He is going to cut the dose in half today and stop it in the morning. We should be discharged tomorrow sometime before lunch..
:)
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Her BNP was 1500 (600-1500 means overt congestive heart failure.) so they decided to put her back on Milrinone to give her heart a break. Her Echo looks the same as it did at discharge on the 5th of June, so that is good. At her clinic visit last Monday, her regular transplant cardiologist told me that as long as her heart function looks the way that it did on that visit, he is not concerned with her BNP, it is just one part of the puzzle and not to be too concerned with that number. (He is not at this hopsital, we are at ACH and he is in Gainesville at Shands.. Shands is a 4 hour drive for us). I am hoping to talk to him this morning on the phone.
Otherwise, she looks great! I was shocked when the nurse came in and said she was going to start her Milrinone. That is a big drug to use before telling us what they are doing and why they were doing it, especially when we were told that they were just going to “observe her”. Mark talked to the Cardiologist last night on the phone and politely told him that we would like to be informed when changes are made.
They started IV antibiotics last night - I hope to find out what they put her on when I go back. She is requesting her standard Pancakes and Bacon for every meal :)
That is the update for this morning. I will update again once I can get back to the room.. and can speak to a doctor..(The nurses are doing change of shift) I hope and pray that this wont become an extended stay like it did last time, I can not see why it would.
Today she was suppose to start Summer School :(
Thanks for the prayers and support…
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Back in the hospital…
Emma is back at ACH. She had a fever of 101 this morning and was complaining of a headache. I called her ped, and she said to bring her back to ACH. When we got here they did an ECHO, which was unchanged since the last one on her birthday (6/5) but her white blood count came back 20,000. Her normal is between 4-8000. So they admitted her for observation.
So keep us in your prayer. It isn’t as dire as it was last time, but she is still sick and that breaks my heart. I think it is just the weaning off of the steroids (I was on them after my brain surgery and coming off of them is not fun!), they can affect your wbc. Plus we increased her dose of immunosupression medication so those two together are probably the culprit.
Thanks for your support and prayers
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