Things with Weston have been really quiet over the last few days. I should be very grateful for this, but, for some reason, I'm getting frustrated. Then I feel guilty for being frustrated.
He is still on the oscillator. Every time I call/visit the hospital, I hear the same things: he's doing fine/well (depending on the nurse). The last abdominal x-ray came back negative, but we're still watching his belly. His oxygen and other oscillator settings are OK. His blood gases are good. He HATES being bothered. He is still sedated. And then, yesterday: we're changing the frequency of his rounds from every four hours to every six hours so he can be left alone.
Oh, and he extubated yesterday, which means that his ET (breathing) tube came out. That is NEVER a good thing, but it ended being a blessing with Weston. The previous ET tube had a little air leak in it, which means that he wasn't breathing optimally. You can tell there's a leak because it squeaks every time he takes a breath. When he extubated, they discovered that the previous tube was too small, so they put a bigger one in that fits much better and is helping him breathe better. They don't know how he extubated. Sometimes they move and it gets dislodged, and bigger babies will actually pull the tube out themselves. His nurse, L, did notice his hands around his face. Maybe he's already messing with his tube! After all, he weighs in at a hefty 1 lb 10 oz now.
It takes a while to really stabilize on the oscillator, but I feel like things have been OK for a few days now. I don't know why I'm so obsessed with feeding and pooping when breathing is obviously so much more important, but that is my thing right now. I think, to me, it represents normalcy. With Caroline, I would record how often she nursed and pooped to make sure everything was moving along. Although Weston "eating" from a feeding tube is a far cry from nursing, it is still one step closer to normal, at least in my mind. And he was doing so well with the feeding and pooping for a few days, so eliminating the feedings was a step backwards. Resuming feedings would also mean that the belly issue is completely resolved, and I really want that too.
Ultimately, I want things on the oscillator to stabilize so Weston can go back to the regular ventilator and, eventually, off the ventilator altogether. I'm tired of seeing him sedated, although I know it's the best thing for him. I don't ever try to hype him up or anything, but there's definitely more interaction when he is not sedated. Also, we can hold him again when he's off the oscillator.
Sorry for being such a complainer. But it's just one more part of the emotional journey, I guess. I have a lot to be thankful for: my BFF flew in from Seattle yesterday for the weekend. She and another old friend got to meet Weston. Baby R is doing much better. I got a really sweet and thoughtful gift from a high school friend whom I haven't seen in over 15 years. She sent the package to the hospital, and a nurse gave it to me with the remark, "You know you've been in the NICU too long when you start getting mail here." It's been almost three weeks: we've only just begun! We have also received a CD, a blanket, hats, and countless other thoughtful gifts, just in the last few days. And I had lunch with my former firm yesterday, which is always a pleasure. They were very relieved to learn that an oscillator is just a fancy ventilator and that Weston is NOT strapped to a permanently-oscillating fan. And in case you're scratching your head about that last one, be assured that everyone at the firm is very intelligent. :-) You'd be in good hands with any of them if you ever need an attorney.
So, it appears that God is trying to teach me PATIENCE. I need to be content with Weston's progress at this point in his NICU journey. I will do my best. With that being said, though, please pray for some overall progress with Weston in the next few days.
Oh, and one more thing: someone else asked S to be her son's primary nurse. I will go to war over that if I have to: no one is stealing S from us! I found out because I asked someone else to be his weekend primary. The same mom had already asked her, so I was too late. She reassured me that we will get to keep S. Whew! Even though things are quiet with Weston right now, there is always some kind of drama in the NICU!
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