First Week at Home

We have been home for nearly one week, and have gone for walks every day (even in the rain).  Since Zayne was running inside the hospital, I expected her to go running down the sidewalk.  She can walk much farther than before transplant, but not quite ready for a marathon.  Thanks to her new energy, Zayne is not taking a nap during the day.  This means that she sleeps very well at night.  Zayne still needs to recover from the surgery, and let her muscles grow stronger.  Then there is the issue of ‘how much exposure to the world’ is allowable.  I had a doctor and a nurse tell me that I could take her out, but needed to be cautious.  I was feeling like I was being overly protective by not letting her go back to summer camp.  After the latest medical appointment, I received another story from a different doctor and nurse.  The latest is that I should keep her at home with minimal exposure to other people.  Apparently, Zayne may not be starting the fall preschool year with her classmates.  Even playing with dirt is dangerous due to her severely weakened immune system.  We are practicing a lot of hand washing and using much hand sanitizer.

For the next 3 months, we have to be at the hospital at 7 am every Monday and Thursday for a blood draw, echo, ECG, and exam.  As you can imagine, the blood draw is a huge, painful issue for Zayne.  The last appointment, had another painful surprise – stitch removal.  The surgical tech told Zayne that it wouldn’t hurt, but Zayne was screaming and bleeding as the tech painfully tugged and cut the stitches.  Zayne is learning to not believe medical professionals.  As before the transplant, the echocardiogram (ultrasound) was enjoyable because it doesn’t hurt and she can watch TV.

The meds are a struggle.  So far, we have done pretty well using Hershey’s Syrup and playing rocket ship (to me, the syringe looks like a rocket).  However, it is starting to get old for Zayne, and she has had enough.  This morning, she told me “I don’t like you.  You always tell me what to do, and I don’t want to do it.”  On the weekends, she has to take 6 different medications in the morning (not including the mouth wash for thrush, or the aspirin).  For med transport, I bought travel toothbrush holders (perfect fit for a full syringe).

Check out the comparison between Zayne’s pre and post ECGs.  The pre-transplant ECG is on top, and the post-transplant ECG is on the bottom.  I have to get this framed for her bedroom.