Weekly meeting

Our weekly meeting is today. I’m not expecting it to be the complete crap-fest it was last week.

Going in, here’s what we know:

  • Sam’s doing much better
  • His CRP is 1 (down from 20!)
  • His O2 has been between 25 and 35, his respiratory rate is coming down, and he’s doing a LOT more breathing on his own
  • He’s not on any dopamine; only on one antibiotic now; only getting a half dose of hydrocortisone once a day
  • He has gas in his belly, and his feeds resumed last night
  • He’s gotten rid of most of the swelling
  • His eyes are hazy
  • He’s now only getting blood draws every OTHER day, rather than every day. This is huge because it means he won’t be giving away so much blood, and hopefully give him a chance to regenerate his own, create his own platelets, etc. He’s been getting some type of blood product transfusions almost every single day of his life. Moving to fewer labs also means the doctors feel he’s not as critical. Whoop whoop!

We definitely want to find out more information about his eyes; we’re nervous about his feeds. He’s made such astonishing progress since last week that today’s meeting should be a breeze, right? I’ll update later when we know more.

In related news, another nurse put in a request to be one of Sam’s primary nurses. We were a bit surprised, but pleased. She seems to have taken a particular interest in him, and so far I like what she’s doing for him. She taught me how to do preemie massage on him (if he’s tolerating it), she’s met with the physical therapist to find out other developmental things we can do for him. Yesterday she wasn’t sure if she’d have Sam as her patient, but if she did, and he was doing well, she was going to page the PT, learn the techniques, then teach me. No other nurse has even tried doing things FOR him like that, rather than just TO him, the procedures, etc.

Yesterday I worked with him and gave him a hand and foot massage. He immediately got high sats on his O2 (so the respiratory therapist came down on it and lowered his rate), then fell asleep. I would too!

Update: Post Meeting

Sam’s doctor plans to stop his steroids soon. Yay! His lungs are definitely better. Hoping he can get off the vent in a week or two. If not, we’ll try another steroid.

His feeds are currently 1CC twice a day. Crazy how tiny that is, but it’s what we gotta do to make sure his belly can tolerate it. We want to avoid NEC at all costs.

Earlier this week they were finally able to get some chromosomes from him, so they sent them off for testing. They want to find out why he was so small, why he didn’t grow. Well we know why….bad placental cord attachment, bad blood flow. But they want to know if there’s something else, see if there’s a genetic issue, if there will be any future abnormalities. We should see preliminary results in 3-4 days.

He’s still on just one medication for a possible fungal infection (still don’t know exact cause of what made him sick).

 

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7 thoughts on “Weekly meeting

  1. Such good news for the most part. I love reading these updates. Please keep posting. I worry about him every day. (And I’m going to assume that Sebastien is still just trucking along!!)

      • Thanks for the update. Glad there’s so much good news about Sam. But how could there be a genetic issue with Sam and not Sebastien? Are there environmentally caused genetic abnormalities? Or haven’t they tested Sebastien for chromosomes?

  2. Rebecca from FF says:

    Good progress!! And the new nurse sounds like a complete blessing – hope she can get assigned to him. The more advocates on Team S&S, the better, right? Keep up the good work, little guys!!!

  3. Glad y’all had a good meeting. He is making so much progress! Hooray for the primary nurse! She sounds like she will make such a difference for all of you. My Becca is STILL followed by a geneticist, just to make sure “nothing pops up.” They did a chromosomal microarray (had to send the sample to Texas, even) that mapped out most of her chromosomes, and everything looked clear. Whatever. We’re like you – she had a crappy placenta, crappy cord, and I had pre-e and HELLP. The chances of there being ANOTHER cause? It could happen, but really. The geneticist visits are pretty interesting, at least!

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