Andy and I got a lot of much needed sleep last night. We both agree that, besides the night of her surgery, the 30 hours we had Ramona at home was the most terrifying experience of our lives.

As we drove back to the hospital, Ramona in my lap in the front seat to keep her as calm as possible, we were holding hands and praying that she would survive long enough to be readmitted. I’m not trying to be a drama queen, believe me, but I honestly thought she might stop breathing while we were stuck in I-94 traffic.

She’s much better now. We think she was suffering from pretty severe ativan and methadone withdrawal. She vomitted and had diarrhea so much in that 30 hour period that she lost a half pound (which would not get me into my skinny jeans but is like 5% of her body weight). So they’ve got her on a continuous feed through her NG tube and have her all lubed up on sedatives. They’re now going to start that weaning process again but at a much slower rate. Even if we take her home this next week, she would likely stay on the drugs. Which is fine by me! I’d prefer anything to trying to care for the world’s tiniest junky at home. Again, not to pour on the drama, but our first attempt at caring for Ramona at home was a disaster.

So we’re looking into private-duty nursing, which isn’t covered by our insurance. We’re looking into Medicare which might cover some at home services. We’re looking into hospice should Ramona take a turn for the worse.

And we’re taking a good look for the first time at the real possibility of having to make some choices about Ramona’s care. If she’s not able to remain stable at home, what then? We’re trying to figure out if there’s a difference between loving Ramona enough to fight for her and loving her enough to let her go if we need to. We’re getting some peace about all that. Feels like we’re giving it over, not giving up.

We feel like we stared down death for the second time last night (insert drama disclaimer here). So we’re pretty beat down, but looking forward to some rest these next few days. We plan to take Simon to the Nature Museum tomorrow and spend some time really having fun with him, which we haven’t done in a while. And with Andy’s mom here to help and Ramona back in the able care of our PICU nurses, there might even be a date night in our near future.

Love, Jane.

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