Today was full of ups and downs; started the day with Ebonie waking up at 5:30a ready to start her day with a racing heart. Of course, that means a lot of nurses, doctors and specialists coming in her room which already makes her nervous. So, this morning was changing medication and trying to get her heart rate down but keep her blood pressure up.
Ebonie started running a temperature this late this morning so sputum and blood tests to ensure there is no infections. However, her arms are so swollen, so they had to use an ultrasound to try to draw blood, they were able to get it from one arm but not the other. This will take 24-72 hours to get all results back and confirm if there were any infections.
On the good side, Ebonie was able to get 3 of her chest-drains out so hopefully that will relieve some pressure and those can heal quickly. Those came out quickly and easily; now down to just one drain near her heart but that one will stay for a long time.
Tonight, is a bit rough and frustrating as a parent. A heart transplant, although not common is usually a much easier recovery. Basically, everything that can go wrong so far has gone wrong. I just want to scream, cry, throw something and take her place so she doesn't have to deal with everything. Her right ventricle was having trouble, now the left side is; there's too much pressure then on dialysis she's too dry. Her heart rate is too high, but her blood pressure is too low. She's sedated so she doesn't get too restless and work her heart too much but then she is non-responsive and cannot express if she is in pain, uncomfortable. too hot/cold. I hate this for her! I talked to one of the doctors after evening rounds and asked a couple questions; they aren't giving up on her, but it is going to be a long, delicate process to try to get her back.
Tomorrow morning Ebonie goes down at 7:30am for her first heart biopsy. This will test to see if her body is rejecting the heart or if there is any infection. It's a bit invasive but currently she already has a SWAN line in her neck that they will use to go into the heart so at least she shouldn't have to have another line put in again.
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