Thursday, June 01, 2006

Leave that kid alone!

Today's nominee for the preemie experience 'banned word' list has got to be "roller coaster." If I hear ONE MORE NURSE tell me that Woody's on a roller coaster and that sometimes they have good days and sometimes they have bad days...

Better just leave my threats vague, I guess. I understand that there are nurses that actually READ this, so lest Woody have someone spit in his IV bag, I'll just refrain from being too surly.

Anyway, Woody's had a bad day. Actually, he's running on a bad 36 hours or so. His respiration issues keep getting worse, and when we came into the hospital this morning we learned that he had essentially stopped making urine, which a consensus of health care professionals agrees is a Bad Thing. The real trick that this presents is a clash between competing health care objectives: keeping track of his issues, and letting him rest. I am a firm believer at this point that Woody needs to be left alone as much as possible, because he clearly reacts poorly to unnecessary (hell, even necessary) handling. But ever since he had his art line pulled last Friday he has needed a poke every time he has a test ordered. The worse he gets, the more pokes he needs. Add that to x-rays to check his lungs and his vent tube placement, ultrasounds on his kidneys, and temperature checks and stethoscope readings, well, it seems like he almost never gets a chance to be left alone.

The worst for me are the blood gas readings. These are the blood tests by which they test for blood pH and dissolved CO2. Critical? Absolutely. But accurate? Well... that is another kettle of fish entirely. The more Woody gets poked, prodded, harassed, bullyragged, and spindled, the more he fights against the ventilator, de-sats his blood oxygen, and generally performs poorly. When I was checking on him at lunch the health care professionals decided to take his blood gases at the end of (I swear I am not making this up) an hour and a half of solid "care" (i.e., messing with him). How, I ask, do you expect to get an accurate reading of his blood gas levels after an hour and a half of him fighting the ventilator, de-satting, and holding his breath?

The worst part is that there is really no other option. Without these blood tests, they can't tell if he is getting better or worse in several critical respects. If his potassium continues to rise, for example, it can hit such a critical level that it stops his heart. If his CO2 levels are too high consistently, not only does that demonstrate that he has other problems, but it can cause brain damage. So my frustrations on him not getting left alone are undoubtedly shared by the nurses giving him these cares, but are overriden by the bigger concern of needing to monitor.

Anyway, as is usual, I don't post on bad days until I wind up with some good news to counterbalance it. So I think we hit bottom around 2 when they decided to switch his ventilator back to the dreaded oscillator. After that point, his oxygen percentage required to keep him in the right saturation levels dropped dramatically, he started peeing again*, and subsequent blood tests (grr) have shown huge improvement.

On deck for tomorrow: Woody will be evaluated for suitability of installing a stent out of his chest to do no-poke blood draws. The advantage is obvious. The disadvantage is that it will require a minor surgery to put it in. On the whole, though, I am not so naive as to think he's getting out of this hospital without some kind of surgery.**

Additionally, although he is producing urine again, the kidney ultrasound shows that he's retaining extra fluid there. The doctors don't know yet whether this is a cause or an effect of the recent distress, so he will be monitored (poked, spindled, bullyragged) until that goes away.

Finally, the ultrasound also reveals a blood clot in his aorta. This is not in a place that is doing him any harm, we don't think, but will require monitoring (etc., etc.). The doctors do not seem that worried about it, but it will require vigilence.

*Back when Woody was first getting feedings, mom was talking of the need to 'pray for poop.' Now we gotta pray for pee? I don't know if God has the same scatalogical preoccupations as my mother, but it can't hurt, I guess.

**The hernias, for example, are already on the far-off agenda.

3 Comments:

At 7:19 AM, Anonymous Anonymous said...

Thinking about little Woody today. I have been wondering why more of these blood tests couldn't be bypassed by measuring gas content in the breath. Maybe the accuracy doesn't pass muster yet.

Anyway, chins up. Have a virtual burrito on me.

Kevin

 
At 7:45 AM, Blogger Nathan said...

The breath tests are currently under development, say the professionals. The more they can get information without sticking the better. It's pretty impressive, though, that they can tell O2 saturation levels through the optical sensor, which they couldn't do with any accuracy two decades ago, and the blood gas tests they do now only require .3 of a cc, instead of 2 or 3 ccs of blood. This is really impressive, especially if you consider that when Woody gets a transfusion he gets about 12 ccs.

 
At 4:01 PM, Anonymous Aunt Susan said...

Wow, you are so great about understanding all of the crazy stuff going on with Woody...At the same time, it seems you are able to be rational and deal with it. I don't know how you are holding up, but your hair looks great!! (anything to make you smile) love and prayers to you and maggie. aunt susan

 

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