Hanging in

We’re still hanging in. The past several days have seen Sam through several diagnoses. None of them fully known for sure.

The lower GI was clear; the upper GI showed something. We were first told it was a possible mal-rotation of the intestines. Yikes, in a newborn baby, this would require immediate surgery to correct. The other possible diagnosis was something about a blind pocket, a place where food was gathering and backing up. We’d have to wait for more information.

The next day, the next series of xrays showed that the barium took a funny turn. Was this a kink in the intestines? Would it require surgery? Probably. Problem: Sam isn’t really stable enough for surgery, his platelets are too low.

The next day they see that the barium moved through. Hmm. So now they think it’s a duplication cyst. May not require surgery yet, they want to try feeds again. We talk to the actual surgeon that day: she’s hoping and thinking that it might just be a hematoma, something that will eventually resolve itself and be reabsorbed, no surgery required. There’s no way to know of course, we just have to watch it. She wants to move the feeding tube past this part of his intestines so that they can get feeds resumed and not have to worry about that spot.

We’ve now been waiting for feeds to resume for a couple days now. Every time we think they’ll start, something comes up: bad blood gas (a metabolic issue, give a dose of sodium, all’s good again), another bad gas (this time he just has a big ole loogey in his throat, suction real well, all’s good again).

It’s hard to really write about what’s going on right now….there are so many scenarios we’re juggling, so many outcomes. We can hope for the best, right?

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Sebastien is still moving along, but too slowly for my taste. He’s still desatting when bottle feeding (does fine when breastfeeding). He has to be able to take ALL of his feeds by mouth before they’ll send him home. But they’re still only giving him 25mL of 45mL by mouth every other feed. I keep pushing for him to try every feeding, but they say he needs to rest, needs to grow.

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Sam today is 3lb 4 oz; Sebastien is 5lb 15oz.

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3 thoughts on “Hanging in

  1. Sorry to hear about all of Sam’s issues again. Have you been unable to hold him all this time? I hope at least you’ve been able to hold him a couple times. And I hope they can bypass the problem area and restart feeds ASAP. Keeping him in my thoughts…

    And I know it’s frustrating with Sebastien, but it sounds like they’re just playing it safe, taking it slow. That’s a good thing. He’s doing really well!

  2. We have been holding him, pretty much every day. Done kcare once now, otherwise one of us has held him daily.

    Sam still has a lot of issues going on, but the priority ones are constantly changing. Right now it’s feeding — gotta get those restarted. Feeding will affect the liver and hopefully resolve part of those issues. The other liver issues we still watch and wait. Then there’s the heart issue which will require surgery later.

    Yes, they are being conservative with Seb, but damn, let the boy eat!

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