Updating: Ryleigh has only been asleep for a half hour and they are coming in to check her vitals in a few minutes. Her heart rate is up again and they are trying to monitor it. She had the monitor on one hand and her IV in the other hand and was quite upset about it. She likes to sleep on her side and found it very difficult with all the tubes and cords. She did let out some steam and say to me that if they want her heart rate to slow down then let her sleep comfortably without the cords attached to her. She had a point! So it is quiet now….just waiting for the next vital check and I will try to get some shut eye. They are coming for blood at 6 a.m. and then the day starts again….

I am amazed how the body works when stressed. The hormones have definitely cut in and I can’t believe how parents and caregivers manage in times like this. I am connecting with other parents and realize that there are many of us here dealing with our children’s health issues. There was another parent in the wee hours of the morning doing laundry also because at that time his son was sleeping and he could get away to do the laundry.

still waiting for vitals….better try to get some zzzz’s


  1. Hang in there and hope you both manage to get some sleep. Keep positive and hopefully tomorrow will be a better day

  2. Thinking of you both this morning and sending happy, positive vibes.

  3. Jo, thanks for keeping us informed about what is going on! As Jennifer said, keep positive and I hope you and Ryleigh get some sleep! Sending you healing energy! love always

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