Monday, January 19, 2015

Day 46 Update

Sam had a good night, he slept better than he did the night before, and he woke up around 8:00. He was happy and awake for a couple hours, and then took a good nap this afternoon. He had gotten on a pretty good awake/nap schedule for about a week before the incident Thursday. Since then, he's either been very sleepy or very alert with no happy medium.  He has had some withdrawal symptoms yesterday and today--he has been a little clammy, fussy/agitated, retching, etc. The doctors are trying to wean him off the methadone at an appropriate rate so he doesn't have withdrawal symptoms. We haven't heard today if they will start trophic feeds tomorrow. Mondays seem to be big surgery days, so the doctors are understandably occupied with post-op kids. It was a quiet day overall for Sam. We rocked for a while, and he was happy and alert the entire time.  His hair looks even crazier in pictures than it does in person. 

Dr. Mendeloff, the surgeon, stopped by for a minute to check on Sam. He is such a genuinely caring man.  

Our friends Jamye and Royce brought a gift basket for us, which included a ball for Sam. He has been reaching for it some and holding it. It's so fun to see him interacting!

We met with the CEO of the children's hospital and the director of nursing today primarily about the methadone incident. We met with the patient advocacy director and children's hospital director last Friday, also. I skirt away from conflict if at all possible, so all of this makes me very uncomfortable. Janie, the nurse manager for the CHSU, said she is working on a care team for Sam. A care team is a regular team of nurses that will be the only ones who care for Sam. Since he has had a group of issues, instead of just the heart issue like they normally see in the CHSU, it's even more helpful to have the same nurses over and over so they can tell if any of his behavior/symptoms/whatever are changing, improving, or related to any of his issues. Sam will also remain on the third floor until he is discharged instead of moving to the stepdown units. I would hate for anyone to be in our place, but if your child(ren) need care for CHDs, this is the place to be. 

I love author Lysa TerKeurst. I follow her on Facebook, and I feel like so so many of her posts are written for me. This one was especially poignant for me today:

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