A Mystery

We don’t know what’s going on with Sam. Here’s what we do know:

  • His temperature is shifting all over the place: hot, cold, warm
  • He’s having “spells” — they think he might be having seizures
  • His blood gases have gotten bad and his vent settings are way up
  • He’s not easily calmed down and settled
He’s getting another echocardiogram to see if it’s his  heart. A 24-hour EEG has been ordered to monitor his brain activity so they can better determine if these spells are indeed seizures.
The only positive news we have right now is that they’re started feeds again: 0.5mL/hour. Because of everything else going on, they most likely will not increase them much right now.
The other thing is that Sam does love getting his body massages that I’ve been giving him. He visibly relaxes and lets me massage his arms, legs, head, bit of his chest. Even the nurse commented on how much he responds to me. At least I can give him some pleasure.
In other news, Sebastien, in the last two nights, slept for 6.5 hours and 5 hours.



5 thoughts on “A Mystery

  1. Oh, no. I wish the universe would give Sam a break! Please keep us posted. Meanwhile we will keep him in our thoughts. I know he is such a strong boy.

    • P.S. Keep massaging him! That has to be good for him, to know he is loved. And congratulations for starting to get Sebastien on a sleep schedule! Alice is finally sleeping through the night–for nine, ten hour stretches–well at least she had been for several weeks before last night. She ate a ton yesterday and today though–I think it’s a growth spurt

  2. For all the difficulties he’s facing, I’m so glad you’re able to give him that all-important Mom’s physical touch. That’s feeding his little soul. And hearing your voice is going to be so good for him too. Sam is loved…

  3. tpowers says:

    Congratulations to you and Scott on Sebastion’s schedule, that’s hard to pull off, especially this young. I’ll will pray and send up positive thoughts for Sam that he will get through this latest battle. You are a super mom, keep it up.

  4. I know your glad that Sebastien is sleeping for longer hours. That’s great news.

    Keep touching Samuel. Yes, your touch is helping him feel loved. I know he loves to hear your voice and have you touch him.

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