This morning, I woke up to find hooked up to another magnesium IV. Not only was her magnesium levels a little low, but she had arrhythmia last night. The arrhythmia could have been caused by low magnesium. This is the first arrhythmia that Zayne has had. Not the best news to hear upon waking up.
Unlike the ICU, there is sleep is better in the CCU. I used medical tape to close the gap in the blinds in the nurse fishbowl area – the room is much darker. Zayne and I are happy to have a garbage can in the bathroom (and thrilled to actually have a bathroom with a door) – little things that make life easier. I also love using the toilet in the room, but I’m not supposed to use it. I live in fear of getting caught.
Zayne is extremely fearful of having her IV and PICC lines removed. She is wary of anyone telling her “it won’t hurt”, because that is usually not the case. Today, she asked me why she has so much pain in the hospital. She was very down after her transplant cardiologist talked with us, and spent a good part of the day moping around, and not wanting to explore or go outside. She knows that I worry if she doesn’t want to do things, so she told me that she is OK, but just doesn’t feel like doing anything.
Plan to get rejection under control
- Monthly IVIG infusion for the next 1/2 year. This means a monthly IV, which means pain.
- For the next 6 weeks, we will be coming to Children’s twice each week for early morning blood tests and a transplant clinic visit (ECG, Echo, exam).
- Another heart catherization in June to check heart function and collect biopsy samples
Plan for Friday, May 8, 2020
- The final plasma exchange
- IVIG infusion – this treatment puts antibodies into her system in the hopes that her body stops producing donor specific antibodies
- If there aren’t any problems, go home? If not going home on Friday, then go home on Saturday.
Zayne is much better than when she came into the hospital, but still has significant issues. It could take weeks, months, or over a year to recover. Will she ever fully recover?
