Friday, June 30, 2006

Staying ahead of the curve

Woody's had quite the active week, characterized by more phlegm balls than usual, more movement on his oxygen needs than usual, and more activity to go with it. The last few days he has been quite the thrasher*, and this has led to some concern about him self-extubating soon.

Let me back up just a moment, to Tuesday's post about wanting some consistency in his care. I did not mention it at the time, but the precipitating factor there was the discussions surrounding whether or not to start Woody on a particular nebulizer-delivered steroid. My position then (and now) is that I don't want him being on extra drugs, especially steroids, unless there is an articulatible goal that the care team is hoping the drug can help him achieve. This position was reinforced by several professionals early in his care that warned us about the temptation to give him too many steroids, especially when what he needed initially was just to get bigger and stronger.

None of this is to say that either Maggie or I are against drugs that are likely to help him out. On the contrary, we just want to make sure that he's getting the drugs he needs and not a bunch of other drugs that he doesn't. The steroids, for example, are definitely something he WILL be on, and specifically we know that he will likely need them as he gets closer and closer to extubation. And yes, now we're back full circle.

As the doctors and nurses have noticed his increased activity and decreasing tolerance for the annoying tube that is omnipresent in his throat (and how would you like it, I wonder, if you had to go through life with a plastic tube shoved down your throat and into your lungs?) the threat of his imminent extubation has begun to be something that is always present. At that point, the question becomes what to do if that happens, and the decision has already been made: if he pulls his tube this weekend, they're putting him on the CPAP and seeing if he can handle it. And thus, the decision calculus shifts. While I didn't like him being on the nebulized steroids earlier, because I didn't see that it fit into the stated plan, it now seems very intelligent to give his lungs a bit of a head start should he pull the tube. Moreover, we may go with larger systemic doses of steroids (the so-called 'burst' method as a way to get some rapid improvement) as early as next week in preparation for a planned extubation attempt. So we're just staying ahead of the curve now, and I'm okay with that.

He's now up to 1290 grams. Big and fat.

*Think "head banger".

Thursday, June 29, 2006

Updating the banned words list

Woody's up and down week has begun to level out somewhat. His dips are not as low as they were earlier, and he's showing no signs of any other major troubles brewing, unless one counts his major lung secretions1. That could be a sign of an actual lung infection, it could be that he's just a little more phlegm-y than the average bear, or it could be a sign that his lungs are just trying to expel a bunch of crap that's accumulated down there. This, of course, is what I prefer to think it is.

I am always profoundly thankful that Woody's range of issues are primarily confined to the lungs. Sure, there are exceptions, like the aortic clot (which remains present but not growing nor obstructive) and the slightly enlarged kidneys (again, a long standing monitored issue but not really a big deal) and the hernias (which are, I must say, getting rather impressive. When changing his diaper it gives the impression that he's got enormous balls). But if you consider what else could be going on, none of these are things we really worry much about.

His whole digestive tract, for example, is really impressive (Nurse M2 refers to eating as "his specialty"2). He was increased again today to 16q2 (16 mLs every 2 hours a day), which is getting up there. 16 mLs is about a tablespoon, which doesn't seem like much, but if you consider that they told us he was up to "full feedings" at 10q2 less than a month ago, it is. And he continues to, uh, excrete well too.3

In reflecting upon some of the rhetorical constructs of the last forty-eight days, I thought it best to update the banned word list. From previous entries, we have identified the following as terms that we are sick of:
  • de-satting

  • roller coaster4

  • white-out

  • honeymoon period

  • wet lungs (suggested by Grammie)

To this, I am going to go ahead and add another turn of phrase:
  • "It's an art, not a science."

I mean, yeah, I know that breastfeeding, baby cares, and treatment of any number of these issues are as much about what works, feels right, and can be intuited as what can be demonstrated by way of evidence, reason, and testing, but that terminology is getting ooooooooold.

1. Phlegm balls.
2. "He's a Baggins, not some Bracegirdle from Hardbottle."
3. And with power, I might add. Maggie made the mistake of not shielding his posterior the other day while changing him, and he managed to demonstrate how far he could go with that particular function.
4. A new nurse actually said this to me the other day again. I was dumbfounded, as in "I've been coming here the last 45 days and you think I haven't heard that before, the tiredest cliche in the NICU vocabulary?" But I kept my mouth shut.

Wednesday, June 28, 2006

Rolling on a river

Woody is on the pattern that Maggie and I love with the nurses: primary on during the day, primary on at night. What this means in a nutshell is that the nurses that are the most invested and familiar with him are the ones that are taking care of him. Obviously, with 200 or so nurses that work in the NICU, he can't always have one of "his" nurses all the time, but every so often we run into a few days where he has almost all primaries, and we just feel so very comfortable and safe with his care during these times.

Of course, I want to make it absolutely clear that we trust all of his nurses, and I've never said anything to a charge nurse or a doctor to complain about any of his care, but there's an extra bit of peace of mind that goes along with knowing that he's being taken care of by someone that knows him so well. And as we've gone along, more nurses have signed up as primaries or as "friends", which is just a step below primary in terms of the scheduling priority, and that means that his odds of getting a familiar face has gone up.

Tonight I got to hold him after work, which is always nice, but it was especially good because he's been in a bit of a cranky pattern the last few days. The last time I held him he was having the big swings in O2 saturation, and Maggie was pretty nervous during that time, and it just wasn't that pleasant. Tonight his dips in his sats were much smaller, and I was able to just enjoy the experience and talk to him and sing. Woody especially likes the deep, low tones of songs, which has led me to try to come up with the lowest register songs I can come up with to sing to him. Of these, they fall into two general categories:
  • Johnny Cash songs; and

  • Songs I learned while singing in the barbershop chorus during high school.

Johnny Cash songs are easy enough, considering that I listen to them in the car.* The old barbershop standards, however, can be really challenging, because I barely even remember the choruses to most of them, much less the verses. Tonight I did my best to sing songs in a thematic arrangement, and that theme was "river". So I started with "Deep River", then went to "Swanee River" and on to "Big River" finally finishing up with "Proud Mary." I think he forgave me the absolute slaughter of both lyrics and music that I perpetrated, as he stayed pretty quiescent throughout.

I am feeling pretty good about his progress, as he continues his rather meteoric weight gains. He's up to 1225 grams today, which is about 2 lbs 11 oz. I'm keeping my eye on the chub, as it's one of three prongs of the extubation criteria. Roughly, when he gets close to 1500 grams, starts improving on his O2 needs, and continues not needing much pressure support for his breaths, they will try to extubate him and switch him to the CPAP. The only one of those three that he's not showing excellent progress right now is the O2 needs, and I'm hoping he do better on that too if we can just leave him alone and let him grow some new lung tissue. I'm hoping the extubation date is soon.

*Of course, I can't remember all the lyrics, so I usually go with extemporaneous versions. It always cracks Maggie up when I get to the part about "Woody shot a man in Reno just to watch him die."

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.

Monday, June 26, 2006

No news is good news

Whatever happens with Woody, he is not going to just get suddenly better one day and come home. No, the best way he can go about life is just to get a little bigger and a little healthier every day, which obviously presents some challenges to me, both from a parental and an authorship perspective. On the one hand, I think it's outstanding that every day doesn't have the cloud of 'he might not make it through the night' again, like we genuinely felt a couple of times in the first weeks. On the other hand, it's frustrating to come in to his room for the forty-sixth consecutive day and still see an ET tube in his throat.

Similarly, it used to be that I'd wait until late in the day to post something about his condition when I was concerned about what he was doing and wanted to wait until I had some good news, but now more often than not Woody's condition is about the same as the day before (eating, sleeping, pooping) and there just isn't something really compelling to talk about as it relates to him, so I'll just go ahead and write about how much the three-year-olds in the waiting room, singing songs from The Lion King at full throat is annoying. As a completely made up example, for instance.*

After weeks of asking her, Maggie has now agreed to contribute some of her thoughts here too. I thought she was going to write something today, but she wanted to make sure she "edited" it and didn't "just write something half-cocked" or something. I certainly don't know what her problem is; I barely even edit my impetuous postings.

Woody continues to get more and more feedings. He was increased to 15q2 today, which now officially means he's getting more milk than Maggie can produce. Because of the head start, however, we have a pretty good supply before he will need to be supplemented with formula. I continue to think that his vent settings look better than ever, and I am beginning to expect that they will attempt extubation in the next two to three weeks (that is based entirely on my speculative reading of his improvement, mind you, and not what the doctors have told me).

One final note. On Friday I mentioned something about making fun of Maggie and nursing her 'mechanical child.' It occurred to me later that a casual reader of the site might think that I was referring to Woody, and think me an asshole. Au contraire! I was actually talking about The Symphony Lactina, the dreaded pump that Maggie has to use.

*This isn't annoying, it's just puzzling. I overheard a guy the other day talking about his new son, who he named after a prominent local hockey player. The last name of the prominent local hockey player. Who is Slovakian. Who is, I must point out, likely to leave the team in the next few years due to free agency. There is going to be some serious schadenfreude then, I assure you.

Sunday, June 25, 2006

Rudy, a message to you

Since Woody is once again having a pretty quiet day* I'll go ahead and just get a tangential rant off my chest.

Being at the NICU for 45 consecutive days, I have seen an awful lot of parents and other family come through the waiting room. I don't exactly TRY to listen to the other people's conversation, but in this time I've seen an awful lot of families deal with some of the worst situations that can be thrown at them. I've seen people be told that their grandchildren will be severely disabled, if they survive the night; I've seen tiny babies being admitted to the hospital that don't survive the night, and I've seen more than a few parents saying nothing and just sobbing in a corner. Bad stuff happens here, and these people (and I'm not even including myself in this) deserve to have at least a modicum of respect for their ongoing tragedies, and to have a quiet and dignified area for them to visit their kids, or to wait while one person or two at a time go into the actual baby's room.

There are other people that come to this waiting room. A lot of other people, actually. Many of these people are small children, and there seems to be an inordinate amount of these with no supervision at all. Why would you let your kids play loudly in the room while other parents are mourning the loss of their dreams of perfect kids? Why allow your kids to scream and throw fits with nary any supervision at all? And why, pray tell, is it that when I DO see supervision, it is of the physical variety? It's another example of the phenomenon I already labeled "The Ungratefuls", and it's illustrative of the injustice I see when parents who want so badly to be able to raise kids and do it right have trouble with it while the child abusers and the crack smokers can just pop out full-term babies with seemingly no effort at all. I just don't get it.

Parents: if you're going to bring your nominally healthy kids to the NICU, at least supervise them. Or get out of my way if I do.

*Woody is up to 1130 grams today, which is exactly TWICE his birth weight! YEEEEEHAAAAWWWWWW. Carry on.

Saturday, June 24, 2006

Consolidating the gains

Maggie and I are now working again, but we still try to get to the hospital in time for rounds, because that's when we get the most information on Woody and can get our input on his care. On Monday, I made a special point of waiting around for rounds because that was the first day on for the neonatologist for this period*.

But ever since then, rounds have been happening earlier and earlier and neither of us has gotten in on time to actually talk to the team. Maggie would get there for her morning pump 'n' visit around mid-morning, but they would have already rounded and we had to hear about his progress secondhand through the nurses. So imagine our happiness this morning when not only did we make rounds, we were told some pretty encouraging things about Woody's progress from a long term perspective.

Woody has had a bit of a tough week, but ever since he got his new tube in on Wednesday he's made some important gains, holding to a couple of downward shifts on vent settings (for the first time in memory) and gaining a steady, if not spectacular amount of weight (he's now up to 1050 grams, or about 2 lbs 5 oz). Beyond the statistical improvements, we've noticed a welcome difference in tone-- the nurses talk about when we take him home, and when we can start nursing, and when we attempt an extubation, and stuff like that. I look back on the first couple of weeks and note that most of the hospital staff spoke to us in pretty circumspect tones and didn't seem to want to be optimistic, which is probably right from the perspective of not making us get our hopes up too much, but sometimes felt like we didn't have any idea if a good outcome was possible.

There is nothing magical about what has to happen from this point-- Woody needs to get bigger, and he'll gain weight and improve his lung performance in a feedback loop where he gets bigger and builds better lung tissue and then he doesn't have to work so hard at breathing and can devote more calories to getting bigger. Some milk, some love, and some good care is the long and short of what he needs now.

*Neonatologists at The Hospital That Shall Not Be Named are on for two week stints, and the current one is the head honcho for lung type research and issues, so we've been excited about some high-level oversight when he needs it.

Friday, June 23, 2006

Life, the universe, and everything

[Note-- This post represents a high point on including inlined pictures and media into the Woodyblog. If your connection makes this take a long time to load, please let me know, and I will go back to simply linking stuff offsite, or creating a second text-only page for ~weenies~ like you.]

As of today, Woody's six weeks old. Upon his birth, he was 565 grams. As of today, he's 1050. He was 11 and a half inches long, as of last week he was 14. Perhaps the most graphic difference between now and then can be seen in the difference between the still picture of him wearing our rings on his elbow:

and this brief video clip*, taken yesterday, where I put my ring up to him again so you can see the difference. This movie, by the way, is my directorial masterpiece up to now. I kind of woke him up peeling back the blanket to allow in enough light to take pictures, but at the end of the video I give him a little caress and he fell back to sleep.

No, that ring isn't going back on his arm again. Woody's had quite a bit of play in his vent settings this week, ever since he extubating himself last Saturday. Wednesday he was re-intubated, as noted (over and over), and as of yesterday he seemed recovered enough to make a fairly significant tweak in his settings, namely lowering the breaths per minute setting to 40; it was at 65 as late as Tuesday. Woody's relevant vent settings now show him of getting a VT (tidal volume; the vent is a Dräger vent, made by Germans, and I'm guessing that the VT setting is reflecting the abbreviation auf Deutsche) of 5.0; his max pressure is up to 30, and his PEEP is down to 7 (check the illustrated vent settings over to the right, if you are interested in how the display shows).

There are some interesting and heartening signs of progress that have now begun to develop. First, Woody's oxygen needs have been coming down on an average basis all week, peaking in the mid-70% level on Wednesday, and now are back in the mid-40%s as of today. This may reflect a little bit of a spike below what his 'normal' because he was on some anti-inflammatory steroids to coincide with the re-intubation, but if you consider that he wasn't even put on the really strong ones, I don't think it can account for all of his improvement. Besides, when they attempt to extubate him for good, they're likely to give him a couple of days of strong steroids to help him out, and I doubt we'll discount his progress when that happens.

Second, the max pressure setting (30, recall) has a corresponding measurement that the machine takes with every breath, called the PIP (peak inspiratory pressure), which roughly measures (untechnical definition, so don't get too pedantic with me Nurse S!) how much effort the machine is having to exert vis-a-vis Woody's own breathing, to fill his lungs with the required VT, which is a relatively constant figure around 5. To illustrate, if Woody is doing no effort at all in breathing and just allowing the vent to take every breath for him, his PIP will show at 30. If he's taking some effort, the number will be in the 20s. If he's putting out a good amount of effort, it will be in the teens. If he's doing most of the work, that number will be below 10. Prior to last week, I very rarely saw Woody's PIP go under 20, but in the last few days it's been there an awful lot, and dipping under 10 frequently. This looks like a very good sign to me.

Finally, Woody continues to gain weight, and despite the discouragement of the nipple nazis Maggie has been able to keep up with the production. We'll see how that works. However, they have now upped his feedings AGAIN to 14q2, which means that to break even Maggie needs to be providing 168 mLs a day, which is about the upper limit for her up until now. I'm hoping for a good weekend.

*For the nurses and lawyers (hi colleagues!) who are checking me out from The Hospital That Shall Not Be Named, you already know that your web filter blocks Youtube videos. As a redundancy measure I am also hosting them here, so you can see them too. Have fun.

Thursday, June 22, 2006

It's okay to laugh

Maggie's always had borderline high blood pressure, which is a bit of a concern primarily because of family history (her dad (Grandpa Jerry) died of a heart attack in 2000). A few years ago, though, she started running, culminating in the amazing performance she put on last November, running the New York Marathon. She lost a lot of weight, brought her blood pressure way down into the normal ranges, and generally got very healthy going into the pregnancy. The effort she put out to get in shape and healthy really highlights how sucky it was that her pregnancy was so difficult, because she did every thing right and it still didn't make any difference. All this is to simply give background to a silly inside joke.

Auntie Krista, prior to last year, worked on a blood pressure study at the U, and was trained in taking blood pressure. Because Maggie was concerned about preeclampsia and pregnancy induced hypertension (and especially because, for a reason that wound up having nothing to do with what wound up forcing the emergency c-section, she had been ordered to stop running and most exercise), she took Maggie's blood pressure regularly. During these blood pressure check sessions, we would try to joke around and relax Maggie, because being nervous about a blood pressure test has the perversely predictable result of increasing one's blood pressure. A term that stuck from these sessions was the idea that something could be maddening enough to force one's blood pressure to "one-eighty over preeclampsia", which for whatever reason became very funny to us.

Of course, Maggie did wind up getting preeclampsia, which was one of the two complications that forced the c-section on May 12. I remember visiting Maggie with Krista in the hospital early on in this process where we had a conversation, punctuated with nervous laughter, about whether it was okay to joke about blood pressure of 180 over preeclampsia any more. The answer was and is clearly **yes**.

I've thought about this a lot since then, because it is very true that when one is going through a tense and difficult time, even one as difficult as grieving the loss of someone you care deeply about, the time can't always be spent being morose, gloomy, or focused on the trying subject at hand. Even in the days after Grandpa Jerry's death, for example, I remember us laughing a lot at all kinds of silly things, like remembering his habit of going to Sam's Club for, say, a jar of pickles and coming back with a set of tires. It's been the same here, and a very therapeutic thing for us has been to laugh about what we worry about. So yeah, the lactation consultants make us crazy, but that doesn't mean I can't make fun of Maggie by calling her "Milky McPumpsalot" when she goes to nurse her mechanical child. It's what you gotta do to stay sane.

Woody continues to gain weight and generally do well, and recover from his recent setbacks on the vent. His settings are back up to last week's levels on the pressure guarantee functions, but this is not as important generally as the tidal volume levels, which have not changed. He is also showing some signs of breathing on his own a little more regularly, which is good, although not near the levels yet where we can consider a timetable of making an attempt to get him off the vent. We'll be watching that carefully, because if he isn't close to that point in a few weeks then we may have to consider the possibility of Woody getting a tracheostomy, lest he get complications related to having his tube in his throat too long (and allowing him to improve his development in other areas, like learning how to suckle). One of the complications I'm referring to is the oddly named "floppy trachea." If that isn't something you can joke about, I am not sure what is.

Wednesday, June 21, 2006

Forty days and forty nights

Woody continues to recover from the extubation/intubation episodes of the last few days. I find myself tending to get nearly obsessive about various turns in his health like that, which is really weird because in the long term scheme of things it will probably turn out to be a footnote in the whole history of the Woodytime in the NICU.1

On the other hand, what can I focus on? Woody has already been in here for what seems like an eternity, and even in the more optimistic diagnoses he is likely to be in for another ten weeks or so. I have heard from some people who have been in similar situations, which I find helpful, because it's good to know that there is some kind of light at the end of the tunnel. On the other hand, I've been sent a number of links to research and other people's PreemieBlogs, and I gotta be frank when I say that with few exceptions (thanks, Vince 'n' Traci!), I find them utterly unbearable to read.

The most visceral example for me was reading the Snowdeal preemie blog; that kid started out at 25 weeks and I am very happy to see the recent pictures of a healthy, happy kid. But when I started reading the early posts, I saw far too many similarities to Woody's situation, and when I read about trips to the oscillator and when certain major developmental steps happening it made me very worried and uncomfortable when Woody wasn't matching those steps. The doubt that kept creeping into my head said if Woody isn't off the ventilator by day X then he won't ever be normal and I couldn't stick around to figure out what day X was, even in that isolated example.

This lesson was reinforced when Woody got diagnosed with the PIE and I did some research on it, discovering in the process that mortality rates are ridiculously high, and teaching myself one really critical lesson: if you're going to look up the actual medical research, check the dates of publication. I say this because the first study I read about showed that PIE has an 80% mortality rate-- and it wasn't until I followed up on this that I figured out that the study was published prior to the widespread use of lung surfactant, and described a variant that developed usually in the first couple of days of life in very premature kids back in the 60s.

Anyway, so my overall point is just that when I've learned that when you're in a long term chronic care situation, it magnifies the trials and tribulations that are just routine challenges. It makes me sensitive to setbacks that are otherwise minor ones, makes me read judgments into off-hand comments by the doctors and nurses, and otherwise impairs what I imagine to be a great strength of mine: my ability to separate big deals from small ones. If there is a solution to this problem, I'd love to know what it is, but the truth remains that every small deal could be a precursor to a big one, and Woody remains, despite his advances, a very sick little kid. Which isn't to say that have no faith in him. On the contrary, I believe with every fiber of my being that he is not just going to survive; he is going to be beyond a normal little boy. He is going to be extraordinary. He just has too much fight in him to not succeed. And I just love him so much.

On that note, here is a link to the second Woody movie, taken yesterday. It depicts a rather typical display of Woody getting feisty: he had been lying in that position for a bit, and he obviously is ready to get moved to a different one, but is unable to move his head very well because of the ventilator. Shortly after the end (it's about a 30 second clip) he got flipped over, changed, and re-snuggled. Pretty cute.

1. Woody pulled his tube out on day 37 and the same size tube was finally reinstalled on day 40.

Tuesday, June 20, 2006

Very small tempest, very small teapot

At around noon today, Woody got his vent tube switched back to the 3.0 size. This was kind of a big deal, for a few reasons. First, every time you intubate a small baby it is kind of dangerous, because the tissue in his throat is very sensitive, and the more attempts you make the more likely it is that it can get abraded or otherwise damaged. Second, this is complicated by the fact that he had an attempted re-intubation after he pulled his other tube out. Third, because his failed re-intubation was possibly due to swelling in his trachea, they gave him 24 hours of a steroid for anti-inflammatory properties, which is always somewhat of a concern for some developmental issues (to clarify, briefly, studies show that prolonged exposure to steroids for preemies can have detrimental effects on their brain development, as well as making it more likely to thin the digestive tract. The question that has not been answered very well is what length of time constitutes 'prolonged'. The doctors are pretty sure that 24 hours does not. And heck, he's been on steroids before, to fight the PIE, so obviously their benefit outweighs this theoretical risk from time to time).

But after all of the worries, the NP got his new tube in just fine. Maggie arrived shortly afterwards, and got nervous because of how many people kept cycling in and out of his room for various reasons, but in retrospect I think she knows it was pretty routine followup and maintenance sorts of things, and not because the staff was trying to bug him. He's doing very well now, and my concerns surrounding the re-intubation have been allayed.

Any time a procedure has to happen to Woody and we're around, it's a worrisome thing. And I do mean any time; if it's even routine blood tests that are being taken, he can squirm and set off his monitor alarms and the room is just not a great place to hang out when it's beeping and buzzing and whirring with activity. When you add in the worries of tube issues like he's had, it can make waiting for news near torture. So I absolutely sympathize with Maggie's worries there. Add in the fact that she is still anxious about her pumping schedule (thanks again, lactation expert) and note that it's tough to do any milk letdown when you're even sort of freaked out*, and it's easy to see why she was nervous today.

Today has not been without its humor, though. The picture I'm currently featuring on the front page (here, for when I change it out) shows Woody's isolette with a new bumper sticker given to us by our friend Mary. For those out of state types who don't recognize the reference, it's an exhortation by our late senator Paul Wellstone. I bet he'd approve of its use to encourage the kid.

Also, the very first Woody video clip is now online. You can catch it here, on Youtube. This one was taken day 11, one of his sickest days, and shows him puffy with edema and with the raw skin that he had right after birth. But he's pretty feisty even then, and waves around his hand even though it has an IV in it.

*Like squeezing blood from a turnip, as Maggie says.

Monday, June 19, 2006

Further offensiveness

Maggie only rarely reads my postings here, despite my repeated offers of her own byline and some limited editorial control over the contents*. So, when the micro-controversy about the website came down on Saturday, one of the first things she did (besides admonish me for making trouble) is actually go read what I had said. Her comment to me was that she thought I ought to talk about Woody more. In fact, she followed it up yesterday by telling me that she liked that posting more, and when I asked why, she said that it was because it was actually all about him.

I certainly have considered her concerns, but I don't know if it's entirely reasonable to expect that I won't be talking about life in general, or what we're doing, or issues we wrestle with. I mean, I would get pretty bored writing day after day variations on "Chronic lung disease. Sick baby. Eats well. Up 10 grams in weight." (and how bored the hospital's legal department would get-- hi, colleagues!) Besides, the longer this whole process goes on (and I am anticipating that it will drag on another couple of months, at least) the more I realize that spending parts of every day in the NICU is a profoundly weird way to go about life. And besides, if the discussion on lactation is a little strange to have out there, just wait until we get into the discussions of circumcision.

All that being said, Woody is settling nicely into his new room. His smaller tube is bothersome mostly to me, although it's keeping his oxygen requirements far higher than we like to see them. Upon discussion with his (very competent!) doctor I realized that there was the additional issue with his tube of how the volume limitations of a smaller tube can cause complications for pressure: the smaller the tube diameter, the more that the ventilator has to increase the pressure to force the same volume of air through the tube, so that makes me not like this smaller tube even more than I already did. Apparently they will try to get him back up the larger tube tomorrow or the next day. That being said, his blood gas readings are still very, very good, which is odd for all the desats and other dips he's been doing ever since the extubation. I'll be glad to see him stable and re-tubed soon.

Woody is 970 grams today, day 39.
*She actually has asserted that she has veto power over anything I say here, which I have never agreed to. We did have an agreement prior to Woody's birth of a limited veto power over aspects of parenting that the other didn't like. The limit? I told Maggie that I wouldn't recognize any use of the veto that was arbitrary and capricious, or manifestly unfair. Damned lawyers.

Sunday, June 18, 2006

Happy Father's Day to me

As it was Father's day, I got to hold Woody today and it was just awesome. Nurse J made a couple of scrapbook pages for the day and I must admit getting a little verklempt. I mean, for starters, I wasn't really expecting to be a father on this father's day, and STILL being a father after what lil' Woody has been through is pretty overwhelming if I stop and think about it, which I usually do my utmost to NOT do.

Last night, while Maggie and I were at the Toad the Wet Sprocket concert* Woody got really wiggly while they were re-taping his tube, and he managed to completely extubate himself. The nurses were unable to get the original size tube in there, so they were forced to put the small (the 2.5, for you experts following along at home; he had the 3.0 in before) tube that he started on back in there. After this happened, they called home and left a message for us, which I mercifully did not get before coming in; I would have never gotten any sleep worrying about that.

The new tube hasled to a substantial leak in his throat, and makes him have little squeaks and gurgles with most every breath. Despite his troubles with the hardware and some minor related issues with the vent settings, Woody seems to have stabilized very nicely and doesn't seem to have any real ill effects from the excitement. In fact, the blood gas test he had this morning was amazing: pH of 7.43 and CO2 concentration of 48%, which are both the best we've ever seen.

The other change that Woody gets today, which we regard as a positive milestone, is that he is finally being moved from the original room in the NICU that he had upon admission, and is being moved to a room on the side of the unit, far away from the entrance. This is awesome, because his room right now is right next to both the main doors to the unit and the nurses' station, which means that it is very loud. Woody is sensitive to noise, and it drives me a little nuts when all the commotion is happening, so I think the new room is going to be awesome. The other reason the move is going to be great is that it's on the outside wall of the hospital, so Woody will get to have natural lighting for the first time ever. As we get closer to discharge time, we're going to be very glad for some time to get him accustomed to day and nighttime schedules, so the ambient light will be a very positive step for him.

Finally, Woody's weight is closing in on the magic one kilogram mark, which is just an arbitrary weight but seems big to me. Considering that he was only 565 grams at birth, it's an impressive amount of weight that he's putting on now. The NP told us today that he's running an average weight gain of 15.9 g per day over the last week, which is considered pretty darn optimal. I told Maggie that she is due the credit, especially for not being discouraged after the lactation expert told her that she had screwed up and ruined her chances of good milk production†. He's getting nothing but pure 100% human milk (and the additives, of course), so Maggie is obviously doing great.

*Yeah, yeah, yeah. TTWS is not exactly cool for some of you hipsters out there, but it's fun, inoffensive pop that Maggie and I listened from the year we first started going out (1993, for you historians). Besides, it was a real date, and we haven't had too many of those in, say, 2006. They were pretty likable live; I think they have some of the geekiest looking band members of any show I've ever seen. (Well, except for They Might Be Giants, but that ought to go without saying. NERDS!) When they first started playing, Mag leaned over to me and said, "those guys TOTALLY played Dungeons and Dragons." Too true.

I am sorry to keep beating this dead lactating horse, but another thing I can't believe about the boob is this: why didn't she give Mag the encouragement to continue by pointing out that even if she can't provide all the nutrition the kid needs, it's still really beneficial to at least provide SOME OF the milk? I wouldn't keep saying anything except for the fact that Maggie is STILL anxious every time she pumps, which just makes me resent that person a lot.

Saturday, June 17, 2006

Legal notices*

As seems to befit my never-ending quest to get myself in trouble, this lil' website has come under the steely gaze of lawyers (NO!) and risk managers (HEAVENS!)†. After having a heart-to-heart with nurse J, I have been informed of a couple of issues that I should address. For starters, I was not as careful as I should have been on one of Woody's x-rays, which displayed a portion of a patient ID number. So, I deleted it (for a while, until I can modify the picture to remove that). In another picture, I showed a nurse's face, which she didn't necessarily have much of a problem with, but if the picture had better resolution, a stalker could have blown up her name badge and figured out some information about her. So I deleted that one, even though I was just being extra careful. Finally, I made a mistake in the now-infamous Lactation Specialist post:

...the boob is mostly used to dealing with full-term mothers, and it seems pretty obvious that her advice has limited usefulness for Maggie...

The mistake I made was in my assumption/assertion that the boob was mostly used to dealing with full-term mothers. In fact, the expert is used to dealing with preemies, as the one that talked to her is specifically used and trained by the NICU. Further, I'll go ahead and note that the specialist talked to Maggie twice that day; after the first visit, which I mentioned, she came back in to offer some more encouragement as opposed to just being mean to her.

I'll just go ahead and state my editorial policy on some of these legal issues now, just so it's out there. First, I certainly don't want to violate anyone's privacy; the posting of the nurse's face was not intended, and that's why I removed that picture right away. Second, it's not my intent to post any identifying ID or SSN type information about Woody, because that doesn't do him any favors, for sure. Third, I don't consider myself a journalist here, so I'm not posting the correction based on a sense of journalistic ethics, but just a personal desire to get things right. I post what I do because it's my own site, and it's how I get out my opinion and particular slant on Woody's time in the hospital. I don't owe anyone any duties under HIPAA or any other Federal or State laws, and will change things based on a sense of propriety and decency as opposed to feeling like I have to, legally.

The other meta-issue here is just that the hospital may be a little twitchy about what I say here because they're afraid that we're turning into Those Parents, you know, the ones that are really cranky. Me, I'm just kind of a crank, and despite my puffery here about making a nuisance of myself I really do try to just let the professionals do their job. So have no fear, lawyers and risk managers, I really do think he's getting some outstanding care, and think that all of Woody's nurses are kind, professional, competent people.

All that being said, the lactation specialist still should have been nicer to Maggie.

*My penchant for double entendre and puns really irritates Maggie sometimes. In this case, of course, the post is both as a legal notice and to reference the fact that (the) legal (department) notice(d) the blog itself. Ha, ha, ha.

No, no, that's "Works on commission? No, money down."

Of course, you know what me and Maggie do for a living, right?

**One other note-- it occurs to me that nowhere in this post did I reference how Woody is actually doing today. He's doing just fine. He's back over 2 lbs, this time maybe for good, and his respiration statistics are unusually stable today. Moreover, he's now up to 12q2 on his feedings, and they increased his protein shake amount by 100%, to 1/2 tsp per 100 mLs. I think it's hilarious how the measurement ratio on that stuff is english per metric, by the way.

Friday, June 16, 2006

Never tell me the odds!

I am, as you will quickly ascertain, back to a more upbeat take on things today versus yesterday, although I didn't think that yesterday's was that dark to begin with. You post one little statement of doubt and worry and the next thing you know, your mom's calling you all worried and people are concerned. Let me tell you, if I get concerned for real, it won't be ambiguous*.

Recently Maggie and I were processing some paperwork at home and we found the racing form, er, statistical breakdown of results for extremely premature babies at the hospital where young Woody resides. This sheet was given to us while Maggie was in the antenatal unit so that we could be prepared for various bad outcomes (although I think she took it more as 'keep that baby inside you or else'). This sheet, which breaks down the probabilities of various things like survival and various types of disability rates, put the odds of a 23 week baby of surviving without major disability at something like 14% (this site puts it at 5 to 10%). In fact, let me break down a brief list of bad things that we have been told by doctors since Maggie has been pregnant.

  • Woody's 'viability date' was May 20, a full eight days after he was born.

  • One of Maggie's doctors was going over possible outcomes upon her entry to the hospital. The options for Woody were mostly about how it would be good if Maggie could hold out, but upon being asked about what happens if she had to deliver before the 24th week he answered "disaster."

  • On the day of delivery, the doctor came in to talk about test results. I asked, "is everything going to be okay?" The blunt answer was "no."

  • The day before the emergency c-section, I was given a tour of the NICU just in case Maggie deteriorated. The doctor giving me the tour told me that "many of the tiniest preemies just can't even be intubated, so let's hope she can hold out a while longer, because there's a pretty big risk he wouldn't survive that."

  • Superlatives: Woody is Maggie's doctor's earliest ever surviving baby (after many decades of practice); Maggie is the earliest HELLP/severe preeclampsia patient he saw; rumor has it that Woody may be the youngest gestationally born baby currently in the hospital; and he certainly is the smallest baby in either of our families, ever.

  • As many as 25% of micropreemies get potentially fatal brain bleeds. More than that have some sort of bleeds.

The list goes on and on, I assure you. As the title of today's post references, I have long felt like Han Solo in the Empire Strikes Back, who, being told that the odds of successfully navigating an asteroid field were 3,720 to 1 snapped back "never tell me the odds." I have long since accepted that Woody will need multiple miracles to be alive, much less normal (whatever that means...). But then again, why not him? He's certainly had a number so far.

Woody has tolerated the mini-wean on his pressures well. He showed very marginal blood gases right after the switch, but the followup taken last night showed significant improvement. I am confident that this means that he just needs to be given a little time to adjust to pressure changes, and that he can make some positive strides in the vent settings. He also has handled the extra digestive supplements they give him, and I think this will help him get past the scariest of his problems.

*Some people, like my friend Jared, have told me that kids are very sensitive to their parents' worry and that being scared around him does no good at all. I really appreciate the concern on this and it's been a consideration. I keep my worries close to the vest while at the hospital, unless I'm making a nuisance of myself to the staff. Woody seems to appreciate my presence, and I can usually watch his oxygen sats increase and his heart decrease if I talk or sing to him. I just wish I could play with him more and that he wasn't so fragile.

Thursday, June 15, 2006

A game of inches

Reading Woody's test results is sometimes like calculating trajectories of a NASA probe to Mars: the tiniest differentials can mean the difference between the decision to increase, decrease, or remain the same on any of the technological settings he is subjected to. For example, yesterday Woody's vent setting wean was determined to not be taking when his blood pH and CO2 readings showed up as bad. A smaller change was made today and his blood gases level were different from the bad ones yesterday by .01 on the pH and 4% on the CO2 levels. Yet today we are re-testing and keeping the vent change, while yesterday they changed it right away.

I had a somewhat extensive discussion with the doctors today on rounds on this point, and for most of it they didn't even understand what my concern was: they seemed more apt to assume that I was just asking what a "bad" reading was, or why the reading looked bad yesterday, as opposed to my real question, which was given the margin of error here, why keep today's change and not yesterday's?

In retrospect, I think the answer is mostly that taking care of a NICU preemie of Woody's size is really a whole lot of judgment calls and trying to finesse the art of what he can be pushed into tolerating. While the data looks pretty similar to me (and to them, too, as they eventually admitted) sometimes they will just try to go with a marginal test result in order to see if Woody can be coaxed into better territory. I don't really have a problem with this-- especially if they think I was arguing that they should have put his settings higher again to fight the bad test results. Quite the opposite: I think that if those results were good enough to keep the change today, then they should have kept the change yesterday too. But now we're into some serious esoterica, because the difference between yesterday's discarded change and today's kept one is .2 of tidal volume, and neither change is that huge in the scheme of things.

I admit to being worried about the long term. Maggie has already told me that I'm violating my own rule about not worrying about things beyond tomorrow, but there it is, and it's tough not to.

Instead, I will worry about work and phlegm balls and other silly things like that. Carry on.

Wednesday, June 14, 2006

Prince of Tides

Woody can eat, poop, grow, process wastes, shrug off (or at least not seem to be bothered by) aortic clots, dodge infections, and get well enough to get all of his pokes out, but he cannot seem to make much positive movement on his vent settings. This morning the doctors attempted to wean down his tidal pressure (my annotated picture taken on day 19 can acquaint you with what the stats mean) but the blood gas tests taken a couple of hours later revealed that, once again, he was not tolerating the change, and in fact, required an increase of pressure to maintain his pH and CO2 concentrations. I have lost count of how many times we have tried to adjust down his required pressures with no success to date. It is frustrating.

However, even in the area of his lungs, Woody does have a couple of glimmers of progress. First, the amount of oxygen that is required to maintain his saturation is slowly trending down; as you will note in today's vent settings picture, his O2 concentration is down to 43% (he's averaging a little higher than that) versus the 52% in the May 30 picture (and that was about average then). Second, Woody got an x-ray today, and it shows definite progress in terms of the haze. Now, I don't want to oversell this, because he is a chronic lung disease baby for sure, and his lungs are still very hazy, but the doctors are happy because for the first time in a while they can clearly make out the outlines of his heart on the film. Before, his lungs were so white that you couldn't make out any such details. Maggie and I are very, uh, heartened by this.

Woody is also doing very well in just about every other facet of his care. He's just shy of two pounds, he's about three inches longer than when he was born, and he continues to process food very well. His followups on the aortic clot show that it is not getting any worse and still does not block any flow, which we are very happy about.

I will take just a moment to preview the medium term picture for him. The overall plan is to keep getting food into him, growing his tissue and putting on fat, and generally trying to do whatever we can to get him to heal and get stronger. He should be able to build lung tissue in such a fashion that his tidal pressure and oxygen requirements gradually get lower, at which point we will pull the ventilator tube and put him on a CPAP machine, which works as a breathing assist (NB-- preemies use a tiny version of the same thing that major snorers and apnea sufferers use at night). After that, he may need an oxygen cannula to assist him in absorbing enough oxygen, and if he is not off of supplemental oxygen by around week 36 (gestational-- that would be around August 9) the care guidelines say we likely will be taking him home with some supplemental oxygen.

Around July 1, he will get his first eye exam. Micropreemies, especially the sort that require heavy oxygen support, are at high risk for developing a few eye problems, like Retinopathy of Prematurity (ROP), the condition that made Stevie Wonder blind. Most preemies nowadays aren't rendered blind by this, but a sizable amount have various problems ranging from needing laser surgery to patching to correct "lazy eye" to corrective lenses. My take on this is that considering all the things I've been worried about for him, I will gladly take some eye issues. No big deal.

Obviously, the lung issues will persist into his early childhood and possibly beyond. We will have to be somewhat germophobic when we bring him home, so do not be offended if we seem a little crazy this winter, especially around small kids (I'm looking your way, cousin Leo). But again, this is not that big a deal compared to what could have been the case.

I would like to see him come home by sometime around his due date, which will be around September 9 (Granddad Hobbs' birthday). September 12 is Grandma Stiffler's birthday, and I'm sure she wouldn't mind being upstaged... a little bit.

** Continued commentary on "phlegm balls". Auntie Krista engaged her hotshot doctor boyfriend Matt in a fruitless effort to prove me wrong. He executed a search to see if "phlegm balls" is in any medical literature. The results were mixed: while this exact phrase was not found, I am pleased to report that he found at least one report that mentions "horking up balls of phlegm". I must note for the record that I made no claims as to a medical condition known as "phlegm balls". I consider Matt's research a win for the side of right. Well, me, anyway. And now for the debate as to the proper use of the term of art "to hork".

Tuesday, June 13, 2006

Last of the pokes

After I posted yesterday's update, Woody was visited by the surgeon who installed his broviac stent on day 22, who removed it. I knew that this step was coming since last Saturday, after I talked to one of the neonatologists, but it wasn't until seeing him yesterday that I realized what a great step this really was: for the first time since his birth, Woody now has no needles, catheters, or other types of lines piercing his skin. The reason the broviac was removed was pretty elementary. Now that the kid's up to full feedings, and is requiring fewer blood tests (because he's healthier), the risks of leaving it in (namely, blood clots and infections) outweighed the benefits. I am hoping that the removal of one more bit of niggling pain will help him be generally more comfortable, considering that his biggest problem on a day to day basis is his tendency to get cranky and fight against the ventilator. On this subject, Maggie adds that she would like to see the term "de-satting" added to the banned word list; this is what the nurses say when his blood oxygen percentage goes into free-fall. During these episodes, Woody also has a very disconcerting habit of turning blue, which doesn't exactly make us feel great. But I must hasten to point out that these episodes are more scary for us than they are harmful to him.

In fact, the growing frequency of de-sat episodes was predicted by Nurse J a week or so ago as a sign of, paradoxically, health. The more Woody gets strong and realizes that he can fight his ventilator by either holding his breath, biting the tube, or otherwise preventing the air from hitting his lungs, the more he can semi-intentionally create de-sat episodes. A similar issue has been posited as a reason for his slower-than-usual weight gain*: Woody is so feisty that he may be burning more calories just by flailing about than the average preemie. Which is why he's getting supplements for his feeding.

My mini-rant at the exceedingly patient Nurse M last night was handled graciously and professionally. It was explained to me that the fact that we see Woody handled as part of a 1:2 nursing ratio is a sign that they are not as worried about him, and that a 1:1 ratio is only used on the very smallest, sickest babies. I knew this on some level, but of course I want the best and most careful attention on my kid, as I'm sure most parents can understand. Woody is just not in a position where he is going to keel over at any second, and I am beginning to enjoy the talk about what happens when he is released, and what the criteria is for deciding when that point is. I certainly am very impressed by his progress. As for the grouping of his cares, I am resigned to having to remind people about this weekly or so. It certainly wasn't Nurse M's fault on that point; she wasn't the nurse there this morning, and she knows what to do implicitly.

We will be making an attempt to wean his vent settings again tomorrow; he has not been pushed since Friday, in an attempt to consolidate gains and because he's proven very sensitive to trying to turn down the pressure. The lungs are the last area where he still is not doing that great, and I'll be happy to see any progress at all.

*Woody's weight gain issue is not a big deal. A blip in his growth chart is more like it; today his weight was again up 30 g (to 860), and the professionals look at weight gain week-to-week far more than day-to-day.

**One other note-- I know I owe many, many people emails. I beg your patience! I do enjoy your comments and notes to me and will write you back. xox

Monday, June 12, 2006

The squeaky wheel

I am an empathetic person. I try to imagine what the other guys are thinking, walk a mile in their moccasins and all that jazz. I know that it must be really irritating for the nurses and support staff to deal with a guy like me sometimes, who wants to know what all the settings on the life support equipment are, who gets snippy if I detect a note of condescension in an explanation of a medical condition, or who sometimes demands to talk to managers if I am unhappy with the care or the procedures that are happening with Woody. "That guy doesn't know how busy we are," might be a comment made as I go off on another tirade.

And I'm sure that's true-- the NICU has been absolutely swamped with new arrivals, and without some advance notice I have no doubt that the same number of nurses have to watch over all the babies whether they're critical or not. But none of the foregoing seems to excuse a situation where my child is getting substandard care, as I see it. A baby born at 23 weeks 2 days is highly critical, even four weeks+ into his stay at the NICU, and assigning a nurse to watch him, watch a kid next door (who requires every-other hour feedings while being held), and backing up another nurse's two kids (while that other nurse is at lunch!) is utterly ridiculous. Add that to the fact that the general order that came down the pike after my last round of complaining about 'grouping cares' for Woody seemed to be roundly ignored this morning, leading to a stream of Woody Harassment procedures*, and when I get back to the hospital tonight I am likely to be on the proverbial warpath.

The care grouping thing is the item most likely to cause me to descend into a flurry of spittle-flecked invective. I have done this before, thankyouverymuch, and after complaining mightily to three consecutive nurse practitioners last week, a discernible difference was achieved-- for a while. It is absolutely not a coincidence to me that Woody is more unstable, requires more oxygen, and needs more sedative drugs after several hours of near-constant "cares".

All that being said, I do recognize that they were probably just having a hard morning, and Woody appears to not be any the worse for wear. His weight gain has appeared to slow down a little, so despite the fact that they said he was up to 'full feedings' last Friday they are actually going up another cc of milk per feeding today, so he is now '11q2' in the NICU argot (11 ccs every 2 hours). Moreover, they are supplementing his milk with some calcium and most likely giving him some protein as well. No word whether it's going to be in shake form.

Maggie's milk production continues to inch up, and she is certainly able to meet his needs for milk in terms of the volume she's producing. I have had to give her pep talks and reassure her on a daily basis since the lactation "expert" struck last week, which continues to make me slightly crazy. I have told her that this fear of low production (known to the Germans as "die Pümpenangst") is normal and not to worry about it, as she's doing great. It remains to be seen if she'll believe me at some point.

*Rumor has it that several shadowy groups have arisen to ensure that Woody is taken care of properly and with as little bothering as possible. Reference here has been made to the "HHW" group. I am aware of a smaller group known as the "People Against Poking Woody Unnecessarily" (PAPWU). The hospital should probably most be afraid of the "Woody Hobbs Order Of Preventing and Ameliorating Stressful Situations" (WHOOPASS). I hear they can get real mean.

**Followup to the aside at the end of this post, where I accused Auntie Krista of denying that the flu is a respiratory disease. She loudly has protested, using some spittle-flecked invective of her own (well, I'm supposing she did, although she is in San Francisco/Oakland and I can't really see her spittle from here). The truth is that while we've argued about what her exact point was when this started, her position now can be distilled to the basic statement that "there is no such thing as phlegm balls". That being said, she's still wrong, wrong, wrong. There is so.

Sunday, June 11, 2006

Summing up the week

Scares with clots, touch-n-go on the lungs, and fears of kidney issues were the only real mars on a week of great progress for Woody. As of today (day 31) he weighs 840 grams, which is almost two pounds in 'merican units (or about five standard NHL hockey pucks) and represents a total gain of well over 100 grams for the week.

As for the parents, I actually worked five more or less full days for the first time since Woody was born (and, I'll sheepishly point out, the first time since September of last year, since I was unemployed all winter). Maggie is close to feeling good now, and has been cleared to work a couple hours a day next week.

We continue to try to work on Woody's nurse rotation; we have our definite favorites, and generally have few complaints about who watches him. Naturally, I like to have nurses that know Woody's situation, and prefer that nurses understand that I consider myself part of the team (and don't get snippy with me when I check the vent settings, as happened earlier today) and/or maintain a steady demeanor when Woody shows a little instability. Friday night, for instance, we had a nurse who was not terribly familiar with Woody and his tricks, and when I was holding him he decided to get clever and hold his breath and then try to make some noises around the vent tube. Rather than simply putting him back in his isolette and then checking to see if the tube was in the right place, she hit the code blue button and within thirty seconds a dozen nurses and doctors were in his room checking on him. While I can appreciate the sentiment of not taking any risks, the NP checking quickly realized that he was just fine and the group of excited nurses and residents had to gloomily trudge back to their boring* stations for the rest of the night.

And then there's the lactation nazis. Nothing I've written here has gotten the kind of response that my rant on the milk consultant precipitated. I appreciate the feedback, and I especially appreciate the backup from mothers who have had to deal with lactation and their own boobs. (I mean the experts, of course! What did you think I was saying?)

The real reason it irritates me so much what this woman did was because of the near-crushing of Maggie's gentle spirit as it has to do with her pumping. She's already pretty fragile, and has doubts about her physical capacity for motherhood based on the circumstances of Woody's birth. So why did the 'expert' feel that she had to try to make her feel worse about that? I have had to reassure Maggie many times since Thursday that she's doing well, and that she hasn't permanently messed up her milk capacity, and that she should listen to me (surely I am just as expert?) rather than the boob. Fortunately, Maggie's more frequent pumping schedule has been paying off with excellent results. She's up well over 100% in production since then, and her milk supply appears to be highly elastic with the demand, so as far as I'm concerned, she's fine.

Next week we will try to keep Woody on the chubbening track, and hope that he starts building good lung tissue to outgrow his chronic lung disease. Thanks for the continuing support.

*Boring is, of course, good for the parents and the kids. I somehow suspect that the nurses like a little excitement tossed in, especially if it's the next nurse's kid rather than their own. This is just speculation, of course.

Friday, June 09, 2006

Stalking the nurses

Notwithstanding yesterday's rant against the lactation specialist, Maggie and I are generally very happy with the care that Woody has gotten. As I have become more and more aware of the various types of things that happen to him, I have become both more picky and more outspoken about who watches him and what happens on various nurses' watch. Nurse M and Nurse S, whom I both think are awesome, signed up right away to be 'primary' nurses for Woody, which just means that when they come on duty they are automatically assigned to him. However, both of those are night nurses, and so Maggie and I decided that to ensure a good amount of continuity, we wanted to try to get a few nurses that we really trusted come on and be primary nurses for him in the day, too. Our insidious plot of selective compliments and in a couple of cases, outright asking, has gotten another one or two to get themselves on Woody's side as either a primary or a "friend", which is a less formal version of the primary program.

Mainly what we want to avoid is the scenario we had a couple of weeks ago where a nurse that wasn't familiar with Woody got asked to watch him right before he had a cranky spell, and who seemed to freak out that he was spiraling into some kind of terrible episode, when it appeared to me not that out of the ordinary. We like our nurses to know who they're dealing with. With only a couple of exceptions, I haven't had to meet a 'new' nurse in a while, so I'm really not that worried about it.

In Woody news, he is up to full feedings now, and is getting the milk fortified with a few extra calories and some extra nutrients, because preemies need even a little more than breast milk can offer them in the way of, for example, calcium and iron. He seems to be handling the food pretty darn well. And in the best bit of news in a while, Woody got his one month followup brain scan yesterday, which showed that he still didn't have any brain bleeding and that his brain continues to develop normally. One of the nurse practitioners told me last week that they also do those ultrasounds because a minority of preemies have neurological problems that they have linked to the development of benign cysts in the brain after a month. Ever since she told me about that, I've been worried about THAT too, but his cranium remains clean.

I remain very sanguine about the Woody progress. Now if we could just start seeing some positive movement on his lung development.

A little more dolce with the leche, por favor

Woody is again having a nice and boring day. We continue going up on the feedings, and by tonight he should be getting 100% of his nutrition through his stomach, as his nutrient feed will be replaced by a simple saline solution to keep his broviac stent flowing. We are happy with this. As of late last night, Woody was weighing in at just under 800 grams, which translates into 1 lb 12 oz (or so), which is pretty great. I also think it is very funny how his weight gets converted to me by various nurses. "He was up 40 grams, so now he's 1 lb 10 oz" is what Nurse J said to me the other day. I asked what that translated into for total grams and she didn't know.

One area of care that I am currently not that happy about has to do with an incident that happened yesterday. Maggie had been given a packet of information regarding lactation, and was told about a consultant that would visit her upon request. So she asked if this person could come visit, which she did yesterday. I wasn't there, so what I am reporting is blatant hearsay, although I did have much of the story confirmed by Woody's nurse as well, so I think it must be accurate. I am also taking this as an opportunity to vent a bit, so be warned.

Maggie has never gotten to actually breastfeed, of course, because Woody has had a ventilator tube in his throat since shortly after being born. But we are well aware the breastmilk is the best food for infants, and so we (I am using the highly presumptive first-person plural, even though I not only have not done any breast pumping, but also find this convention pretty annoying as it relates to the declaration that "we're pregnant!") have been pumping since day 2. It's not so easy to keep the milk going when it's always pumping and never any of the touchy-feely aspects of breastfeeding, and Maggie wasn't sure how much she should be pumping, and what volumes of milk she should expect, and stuff like that.

So the lactation consultant comes in, and Maggie explains her concerns, and this boob starts lecturing her about how she's not been doing it right because she hasn't been getting up in the middle of the night to pump and because she doesn't have very much volume, she is not doing very well at it. Moreover, she intoned ruefully, women generally have their maximum milk volume in by two weeks after childbirth, so there wasn't too much hope for Maggie. In short, Maggie was pretty crushed after this, and the nurse even told me that she had intervened on Maggie's behalf during this lecture, because the "lactation nazi" (apparently this is a common pejorative among certain nurses, or so I have been led to believe) really was being pretty mean to her.

Maggie has been highly anxious about the whole pumping thing anyway, and this has further set her off. I have reassured her as well as I can, and primarily because of the following facts, which the "expert" apparently failed to note:

  • First, the boob is mostly used to dealing with full-term mothers, and it seems pretty obvious that her advice has limited usefulness for Maggie. Take, for example, the point about most mothers having their milk in by two weeks after the birth-- hello? Maggie hadn't even gotten to the six month mark, and pregnancy hormones work on the milk ducts for nine months+ in a normal pregnancy. It's no wonder she's lagging a little bit, and I really doubt that she won't be able to increase the milk supply.

  • Second, the doctors were pretty clear with her about getting a good night of sleep, especially with the HELLP and c-section to recover from right afterwards. She's deficient as a breast pumper because she follows her doctor's advice? Shame, shame, lactation "expert"!

  • Third, it is my understanding that lactation issues are as much (or more) art as science, and each woman is different from another. One of the things that we do understand is that milk production is a matter of supply and demand. The demands for milk have not been up to the level that a full-term baby requires, so is it any wonder that she doesn't produce to that level yet?

  • Fourth, it is also fairly well understood that milk let-down is made much more difficult by stress. Being only able to lactate into a pump is one thing. Having a sick preemie in NICU is another. But being chewed out by the lactation quack is utterly inexcusable for this reason alone.

  • Finally, this person ignores the most salient fact, which is that even at Woody's full feeding levels, she produces more than enough for him already (even though she, yes, has an output that falls into the 'low milk production' range). If we just get her production up gradually, by the time Woody's ready to actually breastfeed there should be no issue.

The only reason the boob came in was because Maggie requested it, and her dire predictions and shameless tut-tutting do not help. I have modestly interposed myself as Maggie's new lactation consultant, and have ordered her to ignore all advice from the milk "expert". We increased the frequency of pumping sessions yesterday, and lo! and behold! she has, less than 24 hours later, already jumped in her production by a considerable amount. Two week maximum my ass.

I am probably going to write some kind of a letter to the administration of the hospital about the incident, but am not settled on exactly what tack to take; I am a little wary about making myself too much of a pain to the people who have to watch Woody. Although I must say that my loud advocacy about not poking Woody too much last week did make a difference, even though I offended a couple of people in the process.

(And as a final aside, I will note for the record that I am not above taking questionable credit for even something as small as getting Woody fewer pokes, whether it was my complaining that led to that result or not. Hey, I didn't carry him, I don't get to pump, I gotta have some kind of role, right?)

**Late Update-- Maggie made the change to increased frequency of pumping, and check out the results. What a boob!**

Thursday, June 08, 2006

Set phasers for "fatten"

Woody’s little health hiccup last night appears to have just been a fluke. That or a large phlegm ball*, as it were; as we walked out of the room near midnight, Nurse M was able to dislodge a sizable clump of some mucus like substance from his vent tube, and ever since then Woody’s blood gases have been improving, even though he has required more O2 to keep up his oxygen sats.

This sparked two thoughts in my mind, both blatant tangents. First, Woody has not had a full week ever of being on the ‘normal’ Drager ventilator, and I have wondered if he may have in the past just needed some kind of rest period once a week or so, which the oscillator provides (his lungs don’t inflate and deflate on the oscillator, because it pumps air in and out via the hundreds of times a minute micro breaths thing). He has yet to go on the oscillator with this little episode, and I hope he doesn’t again, but it was a thought. Second, I have noticed that my updates recently have tended to be more focused on … the realm of biological body products, which is both a little odd to me and a good thing. The less I’m worried about multisyllabic Latinate syndromes and alphabet soup abbreviations and the more I’m worried about crap and boogers, the closer I get to being a real parent or something, right?

Woody is gaining weight steadily and approaches the magic 2 pound mark. At current rates, he’ll be there by early next week. His feedings are increasing, too. He is now going up one cc every 12 hours, and should be at full feedings (10 ccs) by late tomorrow, as he is already up to 7. This is huge. When he gets to that level, he will be pulled off his nutrient IV and for the first time ever will subsist entirely on real live milk. This will be a big milestone. Also, he gets his followup brain ultrasound tomorrow, which is to confirm that his brain did not suffer the catastrophic bleeding that is regrettably so common in the micropreemies. The first one, miraculously, came back with no bleeding at all, which many doctors have mentioned is just remarkable, as many babies, even those that wind up with no neurological problems at all, have level 1 or 2 bleeds.

*Three straight posts with asterisked asides? It’s getting to be a habit. Anywho, I had a running argument with Auntie Krista last fall about the subject of ‘the flu’. Krista seems to think, like many people, that ‘the flu’ is a disease that involves vomit and digestive woes. My position, which I remain convinced of, is that one can only use the term 'the flu' properly to refer to the respiratory disease. Thus, the defining characteristic of the flu is, like a bad vent tube, ‘phlegm balls’.

Wednesday, June 07, 2006

Ups and downs

I mentioned a few days ago that if Woody's having a bad day, I like to wait until I have good news to report to post. So of course today Blogger was out having a massage all afternoon* so I couldn't post an update, which led one of Maggie's aunts to think that Woody was having a crisis and therefore to get freaked out.

Well, no. At least not then. And Woody's not having a crisis now, but he is having a little bit of a rough night in terms of some adverse test results. The ol' CO2 concentration in his blood is up, the pH is down, and his Potassium is also high again, which is a little worrisome because it can indicate that he is having some more trouble with his kidneys. But I have reason to believe that this is a pretty minor setback. First, his pH is not nearly as low as it has been in earlier crises-- it was 7.20 tonight, which is bad, but not nearly as low as the 7.11 that is his all time low (which got him a quick trip onto the oscillator). Second, the doctors are again trying to get him weaned off the corticosteroids, which he was on earlier because little preemies have issues with their adrenal systems, but by the time they get to 27 or 28 weeks gestational they ought to be figuring it out by then. The last little crisis he had was precipitated, we think, by an earlier attempt to make him go off the cortisone before he was ready to provide his own physiological dose. So he may be reacting to the wean on that again. Finally, he is peeing still, which means he's nowhere near as bad as the last blood gas rough spot, so that is another reason not to freak out. We'll see what happens tomorrow, but I don't think it's worth a lot of fretting yet.

In good news, Woody continues to have excellent progress in the realm of eating and excreting. One of his nurses (we'll call her nurse J) was noting that he was seeming cranky so she checked his ventilator tube to make sure it wasn't plugged or otherwise needing suction, and checked various other things to see if he needed something fixed, only to figure out that he had a ... rather full diaper, and he seemed to hate that. He's now getting an increase of 1 cc a feeding every 12 hours, so he's already up to 6 ccs of milk every two hours, which is pretty huge.

A setback night, maybe, but I'm not too worried. I think he's still doing great.

*I never know exactly what I can assume my audience knows. I heard, for example, that a paternal relative had trouble understanding my email address that is on the bottom of the page; I thought that writing out "at" and "dot" was fairly standard practice for people on the web to post their email address while avoiding spammers (i.e., writing 'crazyATbunnyfireDOTcom' would be Anyway, I'll just go ahead and point out for those who are not as "with it" on the "interweb" that "Blogger" is a web publishing service that I use, which is why I seem so darn good at this computer stuff despite the fact that I'm not "with it" on the "interweb" compared to a lot of people. "Taking a massage" is just a smartass way of saying that Blogger was having technical difficulties.

Tuesday, June 06, 2006

I'll take 'no change' for $600, Alex

I usually like to post updates here in the afternoons after Maggie and/or I have heard what happens during rounds and so I feel like I have a good idea of how he's actually doing, but today I got called away all afternoon and couldn't get back to report how he is doing. I was... auditioning for Jeopardy. Yeah, I took the online test a few months ago, and apparently got reeeeeallly lucky both in how I did and that I got picked to do a regional audition, as they only wound up having twenty total people in the room. Apparently they set some arbitrary score as 'good enough' and then randomly selected us twenty to actually come in for an in-person audition/interview/tryout. It was pretty fun, and now I get put into the contestant pool and maybe (no guarantees, they put far more into the official pool than actually get asked to appear) to get on the show later.

But enough about me. Woody is having a remarkably stable day with no big changes, which is absolutely just fine with us. We've been through a couple of rough patches with him, and I know how quickly he can make a turn for the worse, and there is really just no worse feeling than that sinking feeling you get when you walk in his room in the morning and nurse tells you that x test came back bad, or his oxygen needs won't stabilize, or that he's getting put back on the oscillator, or even that she looks worried. So ever since about day 5 I've said to Maggie about every time we go in that "I'll just take 'no change'" and not even to hope for actual improvement.

Although, he does continue to improve in the amount of food he's getting. Every day that he does well with the food, and passes through the appropriate waste products,* and keeps a soft, pliant belly, he is getting an increase of 1 cc a feeding. So now he's up to 4 ccs every 2 hours, which is just awesome. I certainly hope this doesn't jinx him, but despite the problems he's had in other organ systems, he hasn't had much trouble eating and digesting his food. So I guess he is related to me.

Woody is 27 weeks gestational tomorrow, and I am overall quite pleased with the progress and very proud of him.

*I hesitated to put this little detail in here, but this morning Woody had a quite large passage of excretory material. In fact, the official (I swear I am not making this up) "Pee Wee" diaper scale in his room weighed the result at 18 grams. considering that he gains, oh, 30 grams on a good day, that gave me the amusing image of the presenting resident or NP announcing his stats to the doctor on rounds and getting to his weight: "Woody gained 30, I mean 12 grams since yesterday..."

Just another example of the tiny margins a preemie his size deals in.

Monday, June 05, 2006

The Plan Emerges

I have referred occasionally to the imaginary flow chart of preemie development that helps me conceptualize the development of young Woody and getting him on the road to recovery. This was something I started thinking about very soon after his birth, as I realized that there were several insuperable obstacles to his growth and health that have to be overcome prior to any further progress. For example, on the first night of his life, he really needed to breathe before he was going to, say, be able eventually to belch the alphabet.

As the first week of his life started out so well, I imagined (no matter what the nurses told me) that we'd just go from step 1 (breathe) to step 2 (install IV lines) to step 7 (feeding) naturally to step 10 (get chubby) to step 20 (get out of the hospital) to step 588 (get a full ride scholarship to Harvard). It has been discouraging when he will do something like, say, stop processing blood gases well, which means he goes back on the oscillator, which means they stop feedings.

But ever since he got back off the oscillator a couple of days ago, he's been cooperating with the general schedule, and making it more easy to envision what the overall plan of attack is going to be. Broadly speaking, we have to get his feedings up to "full" levels, which will be something like 9 or 10 cc/mLs every 2 hours. We started him at "trophic" levels, you will recall, which were 1 cc every 4 hours, then 3 hours, then 2 hours, then 2 ccs every 2 hours, and now as of today, our highest level ever, which is 3 ccs every 2 hours. If we can get him up to full feedings in another week or so, then it will be far easier to imagine the overall plan to get him out of here, which involves fattening him up like a Christmas Goose and having him build enough lung and muscle tissue to outgrow the chronic problems that being born so early brings. Of course this plan is what will happen in the absence of any other crises, which are essentially inevitable.

Maggie continues to get better, and I continue to hear new information about how dire her condition was. It turns out that if you don't get the baby out in severe HELLP syndrome (which she had) the liver can be, for lack of a better word, killed, which then means that the mother requires a transplant (if she, you know, lives through it). That is some serious business. She went and visited her coworkers over at the Wild for the first time this morning, and reports that everyone there was very nice to her. I continue to search for new ways to tell people how small Woody is/was and how much he's growing, so thinking in terms of hockey-- he weighed, at birth, about 3 and a half pucks. Now, he's up to about 4 and a half pucks. Which means he's gained a puck since birth. Way to go, Woody.

New tagged picture up: How to read Woody's vent settings.

Sunday, June 04, 2006

Better, quieter, chubbier

Maggie and I are of the mind that the only thing, long term, that will get Woody to do better in all facets is to keep him quiet, sleeping, and getting as much calorie content as possible. Babies are generally cuter when they are fatter, and lil' Woody came out without much meat on his bones at all. Cuteness is, of course, not a synonym for 'healthy', but I'm sure there's some correlation between these terms. He was 565 grams at birth (about 1 lb 4 oz), went down as low as 420 grams at his smallest (15 oz), but has been generally on the upswing since then. His weight today is 760 grams (which translates to about 1 lb 10 oz, give or take a little rounding) which is an all time high, and is generally 'good weight'. Good weight is what he puts on in a controlled, gradual fashion, as opposed to just getting heavier due to water that he is retaining, which is bad. Bad in the sense that tiny preemies tend to have any extra water they retain go to the lungs, which makes an already touchy situation worse.

The rule of thumb as it has been explained to us is that a kid can safely gain about an ounce a day. Woody has never gained that much in good weight in a day, but if he continues his current trends he will be over two pounds by this time next week, and may break the kilogram mark by the middle of the week after that. This of course presupposes that he doesn't take any marked downturns that stop his feeding schedules, as happened last week.

The down trending days, which we have come to dread so much, are a sort of feedback loop of badness when the bad test results necessarily beget the need for more tests, which cause him to be more stressed, which in turn causes bad test results, which then start the whole process over again. I sincerely hope that he behaves himself and doesn't get any bad test results anytime soon, so he doesn't have to get bothered, poked, prodded, spindled, harassed, or bullyragged anytime soon. If he can just keep feeding and resting and getting chubbier, he ought to keep getting better and stronger and moving down the imaginary flow chart that can allow him to be discharged.

Saturday, June 03, 2006

Guarding the door

Woody's last few days have been bad enough, and my allergy to Woody being excessively cared for has gotten so strong, that I have a persistent vision of barricading myself in Woody's room with a large club, not letting anyone in to poke or prod at him unless I say so. I told Maggie about this, and she told me I was likely to get arrested for it.

"Yeah," I said, "but at least I might buy him a few hours of good solid rest before that happens."

This vision is a carryover of my previous desire during the pregnancy to stand outside the cave with a loincloth and a club ready to fend off any intruders. If a saber-toothed tiger comes anywhere near, I'm going to drop it. No question.

All such silliness aside, Woody is having a much better day. He's off the oscillator, his blood gases are looking better, and we're ready to re-start feedings again. The broviac stent installed yesterday is doing well, and we're likely to have his PICC line pulled today, as it is no longer considered 'central' and thus has limited usefulness. I have had mixed feelings about the broviac stent and the way it will be used. The primary reason for its installation was to prevent them from having to poke at him every four to twelve hours, but the primary risk of having it is that the more you use it, the more likely it is that it will clot up or get infected, and that would be worse than having it in the first place. I am fairly confident that the nurses and doctors are all in agreement that every drop of blood they get out of that thing is more precious than gold and not to waste it.

(Maggie tells me that she has ascertained that the running joke among phlobotomists is something about 'why can't these preemies just be born with a spigot', because it would make getting blood a whole lot easier.)

The doctors and nurses are also in agreement that today he gets left alone except at a couple of prescribed 'care times,' which I really appreciate. This will make it much less likely that I confuse any health care professionals with a saber-tooth tiger, and much more likely that I will be able to get out and enjoy the world outside the hospital a bit today.

Friday, June 02, 2006

No saint am I

At this point I get a number of emails every day from people. Some of those emails are from people I know. Some of them are from people I know and that I am related to. Some are from people who I have no idea who they are.

Regardless of who they are from, most emails I get follow the same pattern. They thank me for writing the site, they mention how cute Woody is, and then they say that I'm really patient and/or strong or a great dad or whatever for holding it together. Allow me to respond for a moment to these three points.

1. No problem, I do it for posterity, for therapy, and so I don't have to call everyone. If you like it, awesome! Thanks for the feedback.
2. He is cute! Thanks.
3. HA!

I will elaborate on point number three. I am not strong, I am not patient, and I sure am not a great dad from the perspective of being in the health care system. I get really frustrated with having a kid in the hospital, I get frustrated at what I perceive to be the lip service to the goal of leaving him alone as much as possible (and as I noted at length yesterday), and I sure get really frustrated at what I have begun to refer to uncharitably as The Ungratefuls, that class of people who pop out healthy full term kids seemingly with the ease of sneezing. On the tough days here I can be a real pill to deal with, and am pretty crabby in general when Woody's not doing well. So please accept my sincere apologies if I have been cross with you.

The Woody update is basically that he is back from SURGERY NUMBER ONE. It went swimmingly, apparently, and he now has the Broviac stent, which they will use to draw blood from until it clots up or otherwise has to be taken out. I sure hope that isn't tomorrow, because this has been a particularly long and frustrating day to get it in there. He was supposed to go into the OR at 11, but because of another emergency and general hospital delays he didn't get in until nearly 4. And now, an hour and a half after he came out, the nurses and other staff types are still messing around with him. Oh well, at least he's still out like a light, so it's not like he notices too much that people are prodding, pushing, and folding him.

There is a new picture with notes up on the flickr photo album. This will undoubtedly embarass him to no end for years to come. I hope.

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.