We have talked with everyone today. Or close to everyone it seems. A plan was set up this morning and it worked. Honestly, way way better than I even hoped it would.
The ortho team changed her oxi back to dilaudid (hydromorphone), which is much stronger. A morphine level pain med, (except that morphine itself doesn’t do anything for Aimee). We had been using it up in the ICU, but ortho represcribed in an even higher dose than before. This morning on top of the valium/diazepam that she has been having every 4 hours, they added a big dose of dilaudid. Ed and I (and the team) expected that we were probably knocking her out, but really needed a win, so we all agreed to the plan.
Once those meds kicked in we moved her to her wheelchair. She was in it for 20 minutes and dozed a tiny bit, but was fully rousable. Heartrate stayed decent around 110. O2 was great. Once we put her back in bed she only had a couple of very mild spasms and no retching! Then, oh then, she was awake. Not just awake, alert, engaged, looking around, talking, even laughing a bit. For hours!! 
The child life specialists came in with a bunch of toys and tissue paper. She played!
And then this evening, we did it all again. Gave her all the meds. She sat in her chair peacefully for 30 minutes.
And now she has been back in bed with no spasms and happily awake playing!!
We are in awe! She is feeling amazing! We are so thrilled with how great she is doing after how bad the last 2 days have been.
The child life specialists came in with a bunch of toys and tissue paper. She played!
And then this evening, we did it all again. Gave her all the meds. She sat in her chair peacefully for 30 minutes.
And now she has been back in bed with no spasms and happily awake playing!!
We are in awe! She is feeling amazing! We are so thrilled with how great she is doing after how bad the last 2 days have been.
Tomorrow we need to have a big sitting x-ray done, which is a tricky challenge. Then in the evening we need to have her sit in her chair for an hour trial. Our hope is that if all of that goes well, we will get her another decent night’s rest and be in just the right place to drive her home. We hope for only 2 more nights here!! Incredibly wonderful.
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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