More consistency please

Sam’s still doing ok. Just ok. He’s been fairly stable today, but he’s still fighting something.

He had a rough night last night, heart rate dropped to the 40s, oxygen saturation to the 20s. His nursed described him as ‘black’ in color. His pain medication wore off and he didn’t get his next dose quick enough; he ended up fighting the vent, clamping down on the tube. He’s now on a drip for the pain medication so that the dose stays continuous. Sam’s hanging in; his belly is still swollen, but it’s actually come down a bit in size.

He got a new PICC line today; his old surgical line is being removed sometime tonight.

Just a bit ago, before I left the hospital, he started sneezing, he clamped on the vent again, bradied again. He’s now getting another relaxation medication to help him remain sedated while he’s fighting this.

The biggest event today wasn’t directly related to Sam or Sebastien. I talked to the charge nurse at length today expressing my concern over Sam’s care. He’s in the same room as Sebastien now, which I love, but only two of his primary nurses made the switch with him. So for the last two weeks or so, he’s had a different nurse every day/night (his original 2 primaries only work Friday-Sunday). The merry-go-round of nurses has been Sebastien’s norm, but for Sam, it’s unnerving. Especially right now. He needs stability, consistency, people who know him, know when he’s comfortable, know when he’s not. We need stability so that we can trust his care, trust that he’s in good hands, so that we can sleep at night. This situation will be taken care of now.

The other thing we discussed was the phones. We’re supposed to be able to call or visit 23 hours a day. In the last 3 days, twice now we haven’t been able to get through. For some reason when the secretary isn’t at the main desk overnight, the phones haven’t been correctly routed. So the phone just rings and rings and rings. To put it bluntly, when this happened last night, we were beyond furious. To get around it, I decided to try the main hospital number and ask to be connected to the NICU. It worked. But then we found out that Sam was in the middle of the fit, that “a number of people are at his bedside. He’s getting bagged.” Very upset again.

 

 

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One thought on “More consistency please

  1. Paul says:

    Thought a lot about Sam today, and all of you. It’s hard to read about his pain meds wearing off. (It’s hard to think of him needing pain meds in the first place.) I’m also thinking about how much that little guy is loved, which is easier to think about.

    Anyway, we’ll be praying some very targeted prayers for his well-being and care, and for you guys that you get upheld and comforted as you go through all this.

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