We had a good night. Right after I posted last night Daniel was ready to sleep again and slept most of the night until a little after six this morning. Of course we had the regular nursing check-ins and the times Daniel woke just enough to ask for a drink, but overall it was a quiet night and we both slept more than I would have expected. Yay!

This morning has been a different story. The nurse was in to turn Daniel and make some adjustments. Daniel woke up and immediately tried to sit up, which he must not do until Saturday, so the nurse stopped him and that just pushed Daniel over the edge emotionally. He began to cry and cry and then was angry, yelling for me to go home and for Daddy to come, saying he wanted to cancel or delete the surgery. This went on for a half hour or so until the nurse and I decided he needed more sedation. I have a feeling he will need to be under some sedation for a good part of these next 48 hours. It is so hard to just lay in bed. We are, however, very grateful that we are in a “new era” of post-rhizotomy patient care. Just recently it has been determined that patients are not negatively impacted by having the head of the bed raised up to 45 degrees instead of completely flat. Being able to move within this range is such a relief to Daniel. This is apparently the hardest part of the recovery, and for those 3300+ previous patients who had to lay completely flat for three whole days, my hat is off to you brave souls!

Daniel has asked for breakfast, a smoothie and spaghetti noodles, which has been delivered, but he is dozing right now, thanks to that Valium.

Thanks so much for reading about Daniel’s journey and supporting him and us. I’ll post again this evening with a report of how the day went.

4 thoughts on “Thursday morning

  1. Tell him mister Kurt is praying for him and that I am proud of him for being so brave and not to forget that God is with him!πŸ™πŸ™πŸ™


  2. You’re doing excellent mom. Sounds like everyone is doing their part.Your spirit of patience reflects our Lords. A Godly smile and laughter is powerful part of healing. Please let us know when Daniel can enjoy a Curious George movie. Abria picked it out for him. We thought it would be a nice surprise for him.πŸ™ˆπŸ™‰πŸ™Š We praying for you all.πŸ˜‡πŸ’•


  3. Yay for spaghetti noodles! So grateful they are helping him rest and heal. Get some shut eye too. He’s a witty little cutie pie and his tough, determined grateful spirit will shine through this really rough time. We know he will have lots to say and reflect upon as this journey to new abilities continues. Such a vibrant, loving little boy. I’m so glad they are helping him to be comfortable right now.

    God bless.


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