Tuesday, June 27, 2006

The hobgoblin of little beds

Allow me to admit that what I'm about to say is a variation of a familiar theme, one that you might remember from previous posts such as here or here or here. I believe that Woody is being cared for by some fantastic caregivers, and I really do trust that the nurses and nurse practitioners and doctors have the right things in mind and have lots of experience and expertise when it comes to giving Woody care. But there are a few major issues when it comes to the way that they and he and I and Maggie interact.

First, and most obviously, Woody is our kid. They may like him a lot, be impressed by his spunk and cuteness (and expanding fat rolls), but we love him and will fight tooth and nail to make sure that he's doing ok. Second, they are here to work, and as such they have set shifts that they are here. The neonatalogists, for example, are here for two weeks in a row where they are here, and then another one takes their place. As such, I have seen five different neonatalogists, either as the head rounding doctor or as on-call physician called in situationally. The nurses are on even more of a drastic and noticeable shift schedule, of course; Woody has a set nurse taking care of him for 4, 8, 12 hour, and occasionally longer stretches. Over the weeks that we've been here (and tonight is night number 47), I worry about continuity in the plans for Woody's care. My experiences with Woody have taught me extensively about what he wants and what he needs, and I think I'm pretty knowledgeable about a lot of things at this point.* I just want to see a consistent approach be taken to his cares over the days.

What got me on this point most recently was a series of discussions we've had for weeks with doctors and nurse practitioners about the emphasis of treatments; Woody can be, essentially, taken in one of two different approaches. If they think he's getting ready for an extubation, or otherwise they want him to make positive and rapid progress on the lung issues, then they can decrease the pressures and the rates and the frequency and the other settings on the vent, give him anti-inflammatory agents (steroids), and see if he can handle it. The other approach involves letting him ride on his settings and just shoving as much food as he can handle down his throat and let him get bigger and fatter and stronger and with new tissue in his lungs before trying to make another move.

As you probably know, I am definitely in the latter camp. Woody's doctors are in this camp. His nurses are, almost to a one, in agreement. In order to pursue this aim, the doctors have labeled the approach "permissive hypercapnia" to describe how they aren't going to freak out if his blood gases look marginal, and they'll just let him ride. Another example is the vilified "poke Woody" thing. If he's not doing bad, don't order so many tests. They agree with this stated approach too. Yet there is still disagreement when this comes to practicing these professed policy goals. Permissive hypercapnia is fine, until he's running with some marginal gases, and then the temptation sometimes gets to the doctors and nurses to do something about them. Decreased poking and grouping of cares seems great, but then if he's not having a great day, some of the caregivers seem to not be able to resist ordering more tests.

Which leads to the classic negative Woody feedback loop: a bad gas test, which means they order another blood gas test, which also turns out not so great, which means they monkey with settings, which requires more testing to confirm whether the changes are good or bad, which leads to cranky Woody, which makes his tests worse...

I really don't have a quibble with his care. I just want the consistency. If we're going with permissive hypercapnia, then decide what the lower ranges are and don't chicken out if he's borderline. If we're going with the fatten first strategy, then let's get that kid fat, and not switch horses in midstream. This is my mantra, and if the doctors and nurses and nurse practitioners get sick of my questions and advocacy and making a nuisance of myself, at least they are aware of it. As a member of the care team, my role is to argue for a consistent approach, and I will do it as well as I can.

As for Woody, he's had an up-and-down day, and seems a little bit twitchy. But objectively, he's doing well in the testable things, like oxygen needs and blood gases and such. And tomorrow he's been given a 'lab holiday,' so he won't be stuck at all. Which I like quite a bit. His weight is up to 1170 grams now, and his height is up to 36 cm.

* As I told a nurse a while back, I'm definitely not qualified to take care of a neonatal ICU baby by any stretch of the imagination. I am getting to the point where I know what's going on with Woodrow X. Hobbs, the micropreemie, just because I take the effort to learn about care for him and pay close attention. I definitely am impressed with the real-world knowledge accumulated by the nurses here, as many have been taking care of sick babies for years and years and seen many hundreds of babies cycle through.

**Authorship note. Maggie is back at work this week for the first time, but as noted she will be contributing some posts here too. It looks like she'll be doing her first post here by this weekend.


At 10:39 PM, Anonymous Grammie said...

Nice allusion to Emerson: "A foolish consistency is the hobgoblin of little minds. . . ." Glad you're advocating for a WISE consistency to keep our Woody strong and growing. I love you all!

At 10:40 AM, Blogger Nathan said...

I realized after posting it that it's a chestnut that I've rolled out before in blog writing. But there is something appropriate about that too.

At 2:24 PM, Anonymous Dad/Sherri said...

We're getting all excited about seeing feisty W.X. and his parents again this weekend! Your weather looks a little more inviting than the 95-degree days in Oklahoma will be... Love to you all!


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