Wednesday, August 30, 2006

Impatience versus fear

Woody's been doing so well now for the last few weeks, the idea of actually bringing him home has been more and more at the forefront of our minds. This leads to a particularly strong feeling of mixed emotions. On the one hand, Maggie and I are very much impatient to get the kid home and actually do parent related stuff. On the other hand, we are scared of this, both because we don't have much parent-type equipment, and also because we aren't sure what we're going to do when we have to take care of him when he's not attached to all the monitoring equipment. I can just imagine all kinds of scenarios where Maggie is asking me what his sats are and I'm looking in vain for a monitor and saying "I don't know! Is he breathing?" and Maggie answers "there's no BPM line!" and then we have to do things like, you know, actually look and see if he's breathing using our eyes and ears and stuff.

It sounds pretty comical, and it will be, I'm sure, but he still does occasionally have these little apnea/bradycardia spells associated with his feedings, and it can be terrifying to watch your kid forget to breathe, or to beat his heart, because he has some reflux hitting his vagal nerve, so it's not completely out of the realm of reality. On the other hand, I understand that the reflux issue is compounded greatly by having to do gavage feedings (that is, with the stomach tube), so if we can get him bottle/breast feedings for most of or all of his feedings, we can help that issue out greatly. Many of the kids that have this problem need a thickening agent added to their milk, too, which can aid the reflux. So even though it's a problem now it may not be one when he comes home.

We still don't have much of a good idea when that will be. When we had the big intervention at the first of August they said it wouldn't be until November or so, but that was assuming that he'd be trached, and it sure doesn't look like that's happening now. So near as I can figure, if all goes well he needs about another month to figure out the breathing, then another few weeks to figure out the eating, so the earliest he's coming home is mid-October. We sure want it to be not much later than that, because it's hard as hell to leave him every night in the hospital, when we want him here with us. Although it will scare us to have him here too. I mean, what if we break him?

Tuesday, August 29, 2006

Resetting the flow chart

Woody's now been through every neonatologist in the unit at least twice, and the guy who's on for the next two weeks is the doctor who was on the night he was born. I can only imagine the difference in his eyes between the tiny one pound four ounce micropreemie and the seven pound plus chubster that Woody is now. Woody's a real live baby now, and he is getting to the point that he only has a couple of obstacles left before he's ok to be sent home: he needs to figure out how to eat, and he needs to get his oxygen needs down. The question that we confronted today was, which one of these needs takes precedence?

If we focus on his feeds right now, the key will be to aggressively wean down the supplemental pressure that the high-flow nasal cannula provides. Currently, it's giving him about 4 liters a minute of air up the nose, and that makes swallowing (especially learning to swallow) difficult, as extra pressure tends to go to the stomach and cause distress. If we focus on his lungs, then we will be going very slow on weaning off the extra pressure support. As long-time followers have probably guessed by now, I'm definitely in the camp for going slow and making sure his lungs are doing all right before pushing the foods. The consensus of the doctors agree with me too, although there was some discussion at rounds about starting to cut down his pressure support to introduce more attempts at bottle feeding. The nurse practitioner that has followed Woody for a long time, however, did her typical* excellent reasoning with the others, concluding with "I have great respect for that chronic lung disease he has" to which I nearly chimed in with an AMEN or something.

So he's on the 4 l/minute cannula for another week, giving him some more time to get extra chubby and build more lungs. Woody also had another eye exam today, at which we got the same boring (but good) word that his eyes are slowly progressing, not out of the woods but skirting the need for surgery, and will need to be examined again.

All in all, he's doing great, and Maggie and I are very proud and impressed.

*This is the same NP who famously labeled his hernias "bodacious".

Monday, August 28, 2006

Good week to be Woody

As things continue to go well, it's getting harder to come up with things to report. I mean, how much can one really say about "chubby. cute. all well" as opposed to explaining what terrible obstacles were getting in his way earlier? The other thing that has made it more difficult to post as much as before is that he's far more interactive, awake, and alert now, so it's tougher to justify stepping out to the computer when I can just, you know, hold him.

All that being said, he had another great weekend, and I can see some definite progress beyond anything we've seen before. We're definitely in uncharted waters, and it's pretty fun and a little scary, if for no other reason than because we're obviously going to get to take him home in the medium-range future, and that's going to frighten the bejesus out of us.

First things first-- Woody's blood gases continue to be strong, and his nutrition labs are also right on target with what we want them to be. Since he's doing so well with his breathing, Woody was given the go-ahead to try a once-a-day breastfeeding attempt yesterday, and he and Maggie have given it a try a couple of times. Maggie feels really happy about this, and I am too, because she's put so much effort into trying to make it happen and here it is. Woody's not exactly gotten the hang of the whole process yet, but he's making some good attempts and has been able to latch on for a bit at a time. Maggie's milk supply is low enough that it's not like he's going to get drowned by attempting to feed, so that's actually a positive. When he starts getting the hang of the suckling, he's going to get a breathing/eating study that is conducted by adding some barium to some formula and having him eat some while in a live action x-ray machine. That way they can see which pipe it's going down, because obviously it's pretty disastrous to have him aspirating food right now.

Since Woody had the tube down between his vocal cords for most of the first 100 days, they've grown in an open position, which means not only is he pretty hoarse still, it also compromises his ability to catch any liquids that go down the wrong pipe. You and me, we don't even notice it much, but we have our vocal cords as the last line of defense to not just breathe in stuff that we mis-swallow. So until we have confirmation that Woody's compensating for that handicap, they're not going to try to switch his feeding from tube style to bottle style for the primary way of geting him calories.

The other big news of the week is that we're finally ok with having other people hold him besides me and Maggie and the nurses. The first person to give this a shot was Grandma Stiffler, who held him yesterday. Maggie and I called it "operation make Dianne cry", but it wasn't exactly that hard. Now we have many more relatives to get up here and make cry, starting with Krista, who comes in tomorrow. More grandfolk arrive on Friday, and they can hold and get weepy themselves. He's just so big and ... normal, and he's come so far since he was the little alien-like tiny thing that they first saw in the isolette.

Saturday, August 26, 2006

Another fine day in Woodyville

Woody's extubation continues apace, and we are beginning, slowly but surely, to be confident in his ability to be resilient enough to handle difficult times without having to be re-intubated again. This morning he got a blood gas test, his first since Thursday, and it showed similar results (7.36 pH, 63 CO2, 35 bicarb) to that one. This means that he continues to be able to purge the carbon dioxide from his blood as well as he was doing on the CPAP, and since his subjective signs all seem strong it's clear that he's able to adapt to the new lower-pressure regime of the nasal cannula.

It's been so great to have that setup too, because compared to the CPAP or the vent tube the little tube is just so much easier to deal with. It's not a big deal anymore to just reach into the crib and pick him up, which probably doesn't seem that huge of a deal to parents of Normal Kids*, but for us, considering that we've always had to ask the nurse for help, if not permission, to hold our child, it seems pretty darn big.

Sometimes I just have to step back and realize how far he's come to get some kind of perspective on the whole Summer of Woody. Sometimes I have to do that just to keep myself from going insane every time I show up at the hospital. I mean, by now I swear that I know just about everyone, and the occasional incident where a new greeter asks me who I am or makes me wait while they finish a phone call so that they can fully re-vet me for entry into the NICU can sometimes annoy me. The hospital's been slowly implimenting new security procedures, too, which I'm very happy about, but when it results in me waiting around longer while some greenhorn security guard figures out what they're supposed to be doing I want to ask them "you new here?"

But I don't. Instead, I realize that Woody is over 7 pounds now (3230 g)., which is somewhere around six times his birth weight, and nearly eight times his lowest weight ever. He's made it this far with no brain bleeds, no necrotizing tubeguts-itis, and has thus far avoided a trach. It's been a long, frustrating time, and it's not even near over yet, but I for one am really amazed with the kid, and I hope and expect more greatness from him.

*My mom and her friend Eileen have coined the term BWI (Babies With Issues) to describe kids like Woody and Eileen's granddaughter, who have substantial Issues to overcome compared to the Normals.

Friday, August 25, 2006

Keep on truckin'

Woody continues to surprise us with his strength and resilience. He's not getting daily blood gases anymore, mainly because the doctors want to decrease the total number of sticks he's getting, so as to reduce stress, but his subjective measurements of his health continue to hold very strong. His oxygen needs on the cannula are beginning to inch down, too, which is really the last thing that was making any of the health care professionals nervous about his current setup. The main difference between the CPAP and the cannula has to do, of course, with the amount of pressure being blown up his nose. Kids with the chronic lung disease tend to have issues with collapse, on both a macro- and micro- level. Macro, in the sense that a section of lung or a whole lung could get collapsed and then the kid can't re-open it himself; micro, in that the tiny little sacs that hold the air and exchange the oxygen and CO2 (the alveoli) can collapse, too. So they wanted to make sure that Woody had enough support, so that if he had a big yawn or a cough or something he'd be able to re-open his airway.

So, the upshot of that is that as they've okayed the cannula (which lowered his pressure support by more than half, functionally) it shows that we're less worried about these collapse issues. I have noticed, however, that he's beginning to figure out all the little tricks we do to keep our air moving. He's learned how to cough, he sneezes, he cries, and he clears his throat. I mentioned the joke about how we say that if he de-sats to shake him, but it's almost true in the sense that if he gets agitated, he tends to cough and keep his airways open himself.

Woody is now, by the way, over 3000 grams (he's up to 3130, I think), which translates to about 6 pounds 14 oz. He's huge! He's still on the growth charts, too; he's been running around the 50th percentile for weight, even though he's only in the 10th percentile for length. ...Which means that he's really chubby.

A final note-- our good friends Rob and Jen just had their baby, Harvey Michael, this morning. He's 8 lbs 3 oz., and I think he and Woody will have a great time playing together, as long as Harvey doesn't break him. I expect to see pictures showing up here soon.

Thursday, August 24, 2006

Our next trick

As Woody keeps getting bigger and stronger and able to handle the life off the tube, we're starting to consider what sorts of things are necessary to get him out of the hospital. Lungs are obviously our biggest concern yet, but there's also the little matter of feeding that is a big worry, too. Kids that get to as old as Woody was while extubated often develop oral aversions that prevent 'normal' feeding; they just hate stuff in their mouth and can't be really taught how to suck and swallow, which means that most kids that have a trach also have a feeding tube surgically installed at the same time. Yuck.

Woody has no signs of these oral aversions, though, as he totally loves his pacifier and has an intact sucking reflex. The speech therapist came by today to examine him, as she is the one that evaluates the babies for when they can try real feedings, and said that his sucking reflex is good but not too strong, which in a sense could be good. I'll explain.

Maggie has been pumping like a trooper this entire time of Woody's life, even though the nipple nazis are mean to her (repeated quote: "I think they'd be nicer if I just didn't pump at all!") and the La Leche League meetings aren't very helpful (one woman said "there's nothing more natural than breastfeeding!" which is pretty laughable, considering that Maggie only has nursed the yellow metal and plastic baby, hence her retort "there's nothing less natural than breastfeeding, in my experience.") Anyway, the one thing that has kept Maggie pumping six to eight times a day through every inconvenience that you can imagine, despite low supply, is the idea that one day Woody could actually be able to breastfeed himself. After months of abuse by the mechanical breast pumps, I'm thinking that Woody might be a kinder, gentler way to express, and it could be a lot easier for her too, because of all the touchy-feely woman stuff* that goes along with breastfeeding.

Jeff goes home tomorrow, and then more people come in; Krista comes back from the Bay area temporarily on Tuesday, and my dad and Sherri come in for a visit next Friday. We're really glad to see everyone.

*I would like to say, for the record, that I am 100% in favor of touchy-feely woman stuff.

Wednesday, August 23, 2006

That one question

Ever since last Wednesday, a number of people have asked me, in different ways and at various levels of tact, the big question for us and Woody: when can we relax and declare his extubation permanent?

It's a complicated question, because there are a lot of assumptions that I've noticed that people make when they want the answer. The real question, at least for me and Maggie, is "is he going to have to get the trach?" And of course, we can't answer that question yet, because we don't know what direction he's going to go in, and we don't know how other babies really respond in his situation, and we have the nagging doubts from Extubation I, where it looked really positive early but then steadily went downhill. Because of that, one of the things I'm doing is just watching carefully all of the leading indicators that predicted Woody's problems then. They are:
  • CO2 levels that slowly but steadily increased, starting at the third day of the extubation (going up to 70), and inching up a point or two a day, until the day of re-intubation, when it was over 90.

  • Woody's bicarb rates also slowly increased, in tandem with the CO2. Metabolically, this happens both because the lasix metabolizes into bicarb products, but also because the kidneys retain the bicarb because it's alkaline, and offsets the increasing acidity that the retained CO2 imparts to the blood.

  • Woody got more and more sleepy, and wasn't as subjectively active as the Extubation I continued.

  • Woody's electrolytes starting dropping, especially as his bicarb levels increased.

Based on these standards, Woody is doing awesome. He's still very feisty, his electrolytes are still up, and his blood gas today showed, for the first time while extubated, actual improvement. Yes, that's right, his CO2 was lower than Sunday's, and his bicarb decreased with it. The only real issue has been that since yeesterday, when he switched to the high-flow cannula, his oxygen needs have remained around 50%, which is up by 15-20% from what he needed on the CPAP. While this worries me a little-- and Maggie too-- it's important to recognize that even if he needs to go back on the CPAP, it's not like he needs to be reintubated, nor is he even close right now. Which is why the answer to the question is that as long as his CO2 remains in check, and he is still looking good, his extubation is permanent.

Tuesday, August 22, 2006

Down the flow chart

I have long used the metaphor of the flow chart to describe the various steps that it is going to take to get Woody out of this NICU, starting with step one, get intubated, step two, breathe, step three, survive getting some IV lines installed, step four, survive the trip into NICU, step 785, get a full ride scholarship to college. Of course it doesn't exactly look like the neat flow of progress, because there are always things that can cycle you back up the flow chart, such as 'get re-intubated', and then you get this feeling that you and your wife are going to be coming to the NICU to visit your child until the end of time. Today was not one of those days. Woody got moved back to the nasal cannula, which marks a high water line of his time in the NICU. The nurse on today re-strung his gastric line through his nose, too, which means that for the first time he has, as a matter of course, nothing in his mouth. We are very happy with the progress, although it's still pretty tenuous in the sense that Woody could still decide to go back up the flow chart and get re-CPAPped or worse, so it's hard to be as happy as we could until it's clear that he can handle the changes.

Woody's oxygen needs are a little higher on the cannula, which is to be expected. The CPAP was blowing (theoretically) 7 units (cm H2O) of pressure, and the cannula is a high-flow variety that maxes out at 4, although in practice it's only blowing about 2 in equivalent PEEP (an acronym that, regrettably, does not refer to marshmallow birds). So the difference in the pressure support means that he's doing that much more of the work of getting the air into his lungs, so it makes sense that as he does more of the work he needs a little more oxygen in order to get to the same equivalent blood saturations. Nonetheless, he's still been under 50% for the most part, as low as 40%, so it's not that bad. Prior to the switch off the CPAP, he was averaging in the low 30s with his best periods in the high 20s. I expect to see him come down on his O2 needs slowly but steadily. He also didn't get a blood gas test today, but will tomorrow, so we'll continue to be able to follow the raw objective statistics for comparison purposes. The subjective observations, however, continue to show that he's doing pretty darn good, so we're happy about it.

Woody's great grandmother in Corpus Christi has had some health issues and some surgeries herself recently, but it sounds like she's doing better. We are, of course, thinking about her every day and feeling great solidarity for the time she has to be in the hospital. I understand that in mentioning her theory about kids needing to cry to develop her lungs she was non-plussed at the idea that it was a "theory." I assure you, grandmother, in the strongest possible terms that I meant that being a theory in the same way that gravity is a theory, i.e., the scientific use of the term.*

*I was going to try to explain this further, but I had this prescient vision of Bill Hooker, the Woodyblog Comments resident pedant (xoxoxoxox), correcting me for a poor explanation. Bill, wanna take this one?

Monday, August 21, 2006

Woody gets snuggly

Young Woody remains feisty and cute. Jeff and I walked in this morning and met another nurse that I had never seen before (how does that happen?), and she was struggling with the CPAP mask and trying to calm down the lil' munchkin, who was squirming and crying and red in the face. I had to explain the facts to her as it relates to Woody; if he's upset then 96% of the time it's one of three things: he's in an uncomfortable position and needs to re-snuggle in; he's got dirty pants; or he's having some reflux during a feeding. Oh, and one other real big one. He will let you know when he's tired of getting messed with, and in the effort to get the mask to stay on, he was getting messed with. And there's one thing that works the best to get him to calm down: the kid needs some cuddling. So I grabbed my boy and we hung out in the chair for a while, and next thing we knew he was very calm, snuggly, and relaxed.

Extubation II (Electric Boogaloo) is now on day 4, and we're well past the honeymoon period time when he'd be looking artificially good because of the steroids, so we can start making some conclusions on how he's handling it based on the signals he's giving us. The best signs are subjective, in that he's strong, feisty, and awake a reasonably high amount of the time. The objective signs remain pretty good too. His blood gases are not bad; they aren't showing improvement, but they're not getting worse either. In fact, they are almost identical to Saturday's, which were almost identical to Friday's. His oxygen needs are stable in the low 30s; his heart rate is still usually in the 130s to 150s, which tells me that he's not working too hard (Extubation I had average heart rates in the 160s to 170s). His electrolytes are very good, his prealbumin is awesome, and he's processing his nutrients so well that he may not get the tests again for two weeks, because the doctors are happy with his progress.

He got his weekly eye exam today too, and it showed no change from last time, which is also good because it means no surgery to impede his progress. Finally, he is probably going to go to the high-flow cannula tomorrow, which is great because it's far less equipment to mess with and will require less messing with him, which he'll like. Also, we can start moving towards getting him to feed once the CPAP isn't blowing air into his stomach regularly. All in all, a great start to the week.

Sunday, August 20, 2006

Still looking good

As mentioned, today is a lab holiday for young Woody, so we have no new test results to obsess about until tomorrow, when we have the weekly metabolic labs to go with the blood gases. By all other measures, he's looking very good. His O2 needs remain in the low 30s for the most part, he's still strong, and he has been comfortable for the most part and not too cranky.

As Woody gets better, though, it's felt like we've had fewer and fewer primary nurses on him. I suppose that's partially because of the idiosyncrasies of our primaries' schedules and partially because he's not considered as high of a scheduling priority because he's not so incredibly critical anymore. Even so, it absolutely amazes me that 101 days into our visit we could still have nurses that we haven't seen before, or worse, nurses that we don't like. A brief word on that is warranted, I guess.

Maggie and I have heard through the grapevine that there are such things as problem parents, and I know from my brief forays around the internet that nurses and doctors can easily get lured into a trap of seeing the parents in a NICU setting as 'the enemy', to be dealt with as little as possible and given just enough information to keep them off their case. I don't want this to happen, and I don't want any badmouthing we do about specific nurses to get back to them and for Woody's care to suffer. That being said, we have had one nurse in particular that just bugs the living crap out of us. She's a little surly, a little cold, and when we ask for help or information she acts as if we're really throwing a cramp on her style. When we first had her, a few weeks ago, we didn't like her then, but we were also trepidatious about making a stink about it because, really, what are the odds that some non-primary nurse gets assigned to him again? In our experience, not very high, and so we don't want to blow whatever Charge Nurse political capital on an issue that isn't that big of a deal.

Unfortunately, for whatever reason, this nurse has been assigned a few other times since then, probably because the Charge Nurses are thinking they're doing Woody a favor by giving him a nurse that knows him. So we've been in the weird position of weighing whether we should make a stink about it and risk alienating both the Charge Nurses and the nurse in question, and getting us the 'problem parents' label. We've basically decided to take a pretty low-key approach on the whole thing and hope it blows over, and a primary of ours may try to use her influence to subtly steer some of the assignments away from this person. On the other hand, I've heard of parents who hand lists of nurses to the CNs and demand that 'only these nurses can be on my kid' and they look at the list and it has like six names on it, so at least we're not like that. As long as the health care professionals know that we're all on the same side, I think things will remain very comfortable here.

On a personal note, we've been having a really fun visit from my old friend Jeff, who we knew from back from the Lewis and Clark debate team back in the mid 1990s. Amongst the reminiscing and the clowning around, the idea that we're now like real adults and, in the case of me and Maggie, parents is kind of a wake up call. Kids, let me just warn you, it could happen to you too. Have a happy week!

Saturday, August 19, 2006

Watching closely

We're now over 24 hours past the steroid burst end, and what we see is now much closer to what we get for the Woody stats. While he's doing the steroid burst, his O2 needs could look better than his health actually indicates, but now he's on his own and we'll need to see what he does.

So far, so good. He's been riding in the 30s for his 02 needs, mostly, with occasional forays into the high 20s. The Grandmother Theory that he needs to cry to develop his lungs actually seems to be holding true, too: when he gets into a period of time where he's not satting as well, making him cry and get fussy has the effect to where he seems to blow through some areas of phlegm (balls) and collapse, and then he breathes better afterwards and his 02 needs decline. This has led to the joke that we are going to add a note to his chart to the effect of "when having trouble with sats, shake baby." Yes, yes, I know this is in poor taste because you shouldn't ever shake a baby.

Today is also notable because it's Woody's 100th day on earth. To celebrate, we picked up some cupcakes for the nurses and doctors (and us) and are having a mini-party. My buddy Jeff is out visiting from Washington, and is also helping us celebrate, so we're having a good time. Last night we went out to see the premiere of Snakes on a Plane, which is a truly terrible movie, but it's also pretty hilarious, so we had a great time. (I mean, it's hard to keep a straight face about some of the gratuitous parts of that movie when the whole thing is inherently gratuitous).

Woody gets a lab holiday tomorrow, so we won't really know any new stats until Monday, but subjectively anyway he's still doing outstandingly. He's still feisty, very strong, and awake and with it a good amount of the time. If we can just convince him to... excrete, he'll be totally golden. We're keeping a close eye on everything with him this weekend.

Thursday, August 17, 2006

Tranqs on the wane

Sometime yesterday afternoon, Woody got the memo that the CPAP is, while annoying, a whole hell of a lot better than the ET tube, and decided to chill out. Which has made visiting him much more pleasant. In fact, it's been downright odd to visit him and have his O2 needs be so low so consistently; he's right now at 34% oxygen, which is just unprecedented for him, and is a marked contrast from Extubation I, where his oxygen needs never got within twenty percent of his pre-extubation numbers. His average oxygen needs then averaged in the 60s, but he's running averages in the 30s this time, and we're very stoked.

Not that we don't anticipate it going up, at least a little bit. He's still on his steroid burst right now, which can tend to make things look a little better than they may actually be. This is another reason that, as I alluded to yesterday, his real time of trial on this begins this weekend, when the flush of extubation begins to fade, his pulmonary reserve that was built up over the last few weeks of tubelife is tapped, and he shows us how sustainable he can maintain this time of not being on the ventilator.

Since Woody has been a lot more comfortable now, they haven't had to give him the sedation that was necessary yesterday to keep him from thrashing; he was knocking off that CPAP so much at first that they were drugging him just to make sure he stayed stable. Now, however, he's kind of worn himself out with the crying and the wiggling, and he's resting comfortably. Grammie reminds me that her mother (Woody's Great grandmother) has a theory that babies need to cry to develop their lungs, and if this is true, then Woody's doing his level best to recover.

The blood gas taken this morning was up slightly in the CO2, but it's still in the good range, so we're not that worried about it. We just don't want it to trend upward, and it will be watched pretty closely. Also, he had an x-ray that shows, except for one area of localized "collapse" (a soon-to-be-banned word, I have no doubt-- I rather liked how the NP described it, instead-- 'schmutz'), his lungs were looking overall a bit better than past shots. All in all, Extubation II (Electric Boogaloo*) is going quite well.

*For the squares. I've learned that sometimes my cultural references just aren't gotten by key parts of my audience (my mom).

Wednesday, August 16, 2006

Evening update

Shortly after the last posting, Woody got moved from the bendy-straw CPAP to the other CPAP version that he was on for most of Extubation I, which makes us very happy because it's far more stable and maintainable on his nose. Shortly after this change was made, I was made aware that Respiratory has a glitch in their billing system, that means that they can only bill for one CPAP machine per day, even if they have to switch the machines in the middle of the day, even though they have to account for the machines in a separate way, which means that going from vent->CPAP->different CPAP means they lose out on a revenue stream. Because of this, RT will typically give the doctors and nurses a lot of static about having to switch the CPAP versions. Now, this didn't happen with us today, which is good, because I'd have to Hulk out on the nice health care professionals if they would have tried to make my kid's healthcare suffer because of their billing idiosyncracies. What the hell is wrong with this picture?

The other thing that really bugs me about that is that the original bendy-straw CPAP was run off the same Dräger vent that his intubated ventilation was run through, so it's not like they're having to involve new machinery or anything. The "normal" CPAP (the Aladdin) is a different machine, though. And one wonders why our health care is so expensive.

Speaking of, I haven't actually seen a bill yet for Woody since about the first of June, which is a little frightening, because it was already about a third of a million at that point and we've had an awful lot of care since then. I mean, I think the room/nurse charge alone in NICU is somewhere north of $2,000 a night, and that's obviously not counting lab tests, phlebotomists, ultrasound and x-ray technicians, neonatologists (one of the hugest expenses, I bet), nephrologists, pulmonologists, occupational therapists, and liquor.

Ha ha, just kidding about the liquor. We all know insurance will not cover liquor. Which is why I've added a nice link to the sidebar on sending money via Paypal to keep me in scotch whisky.* Thanks for your support.

Anyway, Woody's still doing famously. He's satting well at 34% FiO2, which is unheard of (good), his blood gas taken at 5 was amazingly good (7.42 pH, 54 CO2), and he's finally getting a bit of sleep. The real trick is going to be this weekend-- he'll do great coasting the first couple of days, but he needs to maintain it well after that for us to feel like he can make it. No backsliding now, kid.

*Note to the humor impaired: This is a joke. I did not actually do this.

Finding his voice

It is early in Extubation II (Electric Boogaloo), and yet I've already divined several key differences in this one compared to the last one:

  • Woody got his oxygen sats up to good ranges within two minutes, as opposed to last time, when he was sitting at 100% FiO2 for an hour and a half before he got above 80% consistently.

  • Similarly, in our last attempt, Woody's all time best O2 needs were only just around 50%; within five minutes he had gotten down to the 30s, and has mostly stayed there.

  • Woody's way more feisty this time, which is good in the sense that he has lots of energy, but is not so good in the sense that he has been dislodging the apparatus from his face a lot. More on this below.

  • Woody's been crying, and even though he has a very hoarse voice from weeks with a tube up against his larynx, he's been just full throat crying when he gets upset.

The upset-Woody thing was expected to a certain degree. As he's older and more aware, he was anticipated to hate the CPAP this time around. I didn't know how much he was going to hate it, though. He gets mad because the prongs irritate his nose, so he thrashes around, which irritates his nose some more, so he screams and thrashes some more, and if you don't hold the tubes he dislodges it from his face, and then you have to put it back in his nose, and that irritates his nose, and you can just repeat the whole process. So far, he's had to get dosed with some drugs to keep him compliant, but I'm hoping he gets used to the whole thing pretty quick, because that's not exactly a tenable long term solution.

The CPAP device, too, is not exactly built to survive this kind of exercise. I'm not sure who designed this setup, but it's basically a couple of glorified bendy straws attached to a soft plastic nose plug, and held on with a very weak piece of velcro. I'm not sure who the inventors thought they were designing this thing for, but it can't have been an actual baby, who observers know tend to do things like, oh, thrashing around and crying and stuff. Although I have to admit a certain perverse pleasure in hearing that cry, since he's been silent for almost every one of his 97 days so far. For the first few minutes Maggie and I were looking at each other like 'oh how cute! he's crying' instead of the preferred evolutionary response, which I understand is supposed to be more like 'stop baby from crying, lest saber-tooth tiger eat us' or something. So we've already had the CPAP fly off his head about five or six times already. Which is annoying.

Well, maddening, actually. We're hoping he gets ok'd to be put back on the nasal cannula soon, because all his stats do seem to be pretty spectacular still.

In short, everything seems, on balance, to be going well so far. I'll try to post more later.

Tuesday, August 15, 2006

Setting the plan in motion

For the last two weeks, we've waited on the eye doctor to give us the word on whether Woody was going to need surgery on the eyes, which would determine when he'd get another shot at extubation. And for the last two weeks, the eye doctor has said 'wait until next week' and we've waited again. Which is why before today's test, what I most didn't want to hear was 'wait another week'-- which is why it was basically inevitable what we'd hear today.

On the other hand, when he left Woody's room, I knew that it sounded a little different; first, it sounded like he was thinking that Woody wasn't going to need the surgery, and needed another week just to follow up. Second, I had a feeling that the NP and the neonatologist that were working today weren't going to let that be his final answer on the subject, especially with the way that Woody's been racing the leak. So I stuck around for a while longer, and the assembled health care professionals came to a quick consensus: we are extubating Woody again, and it is happening tomorrow. Which means it's time for...

Extubation Attempt II: Electric Boogaloo

I assure you that this came as a pretty sudden surprise to me, too. I knew that we were going to, if possible, act quickly, because Woody's pushing a number of developmental milestones, and we needed to do some kind of action in order to deal with that. So, a tale of the tape, as it were.

  • Weight: ~2780 g (6 lb., 2 oz)

  • Age: 36 weeks 6 days (gestational)
    96 days (outside)

  • Chub level: substantial

  • Lung quality: marginal(?)

  • Feistiness: outstanding

  • Most recent test results: 7.34 pH, 54 CO2, 107 electrolyte, 32 bicarb

We shall have many things to watch during this extubation attempt. Woody won't have a hard and fast rule as to when he would get re-intubated (and eventually trached) by test results, but we generally know now what to look out for as danger signs: CO2 levels creeping up, electrolytes crashing, bicarb spiking, increased heart rates, decreased feistiness, and general lethargy. Should we see these same signs, we'll know that things aren't going that well.

On the other hand, I have some reasons to be extra optimistic this time. First, the baseline of CO2 is much lower to start; we pulled his tube for Extubation Attempt I when he was about 70, so every bit he went up was into bad territory. Second, we're doing this before his leak is so bad that he's had to be on the less-sensitive mode of the ventilator for a week running up to it, which makes me feel a little better. Third, his O2 needs are way down from last time. Finally, he's just made so much subjective progress in the last ten days in seeming feisty and strong and with it, ever since his UTI cleared up, that I just feel like this gives him a good chance to make it. Which is good, because it is almost definitely his last before the trach.* Tune in next time, for what happens...

*Dramatic enough lead-in? I had a dream the other night that I got called to be on "Oprah". That was a strange one.

Monday, August 14, 2006

It's a trend

In our run-up to the big eye test (again) tomorrow (or Wednesday, you never know with the neonatal opthomologist) we've continued to follow the blood gas tests rather religiously, hoping that they will continue to show a dropping baseline of CO2, which will give us more hope as to the likely success of the extubation attempt that is forthcoming. I remain very (cautiously) optimistic, especially because these tests show that Woody's levels are, if not continuing to drop precipitously, showing a new baseline that is considerably lower than previous levels. Last night's showed a CO2 level of 60, which is within the same generally good ballpark as the last couple, and with the bicarb level of 31, shows continued progress in that area. I think we have a good trend going of improving blood gases, and it's pretty clear that we're going to give Woody another chance at an extubation instead of going straight to trach.

Woody's Grandma Stiffler held her big annual Corn Feed yesterday, and for the first time since it started I missed it, due to a run-in with a truly nasty digestive bug. I believe it was due to a bit of close proximity earlier in the week with my nephew (the littlest disease vector) Leo, and if my previous bouts with flu and cold the last few months didn't clue me in to the fact that I've got to be careful around that dude, this attack of dysentery or cholera or whatever sure reinforced these lessons. Which is really sad, considering how much I like seeing him and his family, but I have got to start thinking about not passing on even the normal little bugs of childhood to Woody this early, because he's starting life with a deck stacked against him from an immune system point of view, so we need to be really vigilant about the threats out there.

So anyway, I understand from Maggie that a lot of people at the Corn Feed were interested in Woody issues, and I'm glad of that. Still others didn't know what was going on, so there was a lot of interesting comments like 'where's that baby of yours?' But my favorite story on those lines had to be the cousin of Grandma Stiffler who managed to miss the whole thing entirely, asking Maggie if she had even been pregnant. I suppose it's easy to not notice someone's pregnancy if they deliver before they're really even showing.

Anyway, I'm now feeling a lot better and am back in the NICU waiting room, listening to the usual cacophony of bizarre comments and conversations. For the last half hour, I've been inadvertantly overhearing a dad ask his two year old every three minutes whether he's pooping in his pants, which the kid continually denies. I swear I will never do this. I swear it!

Saturday, August 12, 2006

Woody gets a gold star

"I've never seen perfect nutrition labs before," said nurse practitioner C, as we walked in. "But that's what Woody is giving us today." And not just then nutrition-- Woody's numbers were across the board great today, from his prealbumin to his urine tests to his hemoglobin (up from the last one, which is a first) to his CO2, which was down to an amazing 56, an absolutely unheard of number for him. In absolute terms, the 56 is still a bit high, but in Woody terms, it's the best his CO2 has read in at least six weeks, and is a great sign that his body is getting better at purging itself of excess carbon.

The best part about the improved CO2 number is that it's giving us the coveted trend we wanted to see. He had the 62 last Sunday, which I made a pretty big deal about, only to see it go up to 70 on Wednesday, which I thought was bad, but in retrospect it seems explainable by whatever made him seem sluggish earlier this week. Woody is, as I've mentioned, a pretty fluid sensitive kid, and I think he was retaining some liquids earlier this week, because after he got a bonus dose of lasix on Wednesday, he lost about three ounces of water weight and ever since has been feisty, more awake, and improving again in his oxygen needs. Thursday night his CO2 was down below 70 again, and now today's reading shows that when he's feeling better, he can improve his lung performance pretty quickly. This is setting us up for an interesting week, because if he doesn't wind up needing eye surgery, he's going to get another extubation attempt next weekend.

The eye thing winds up being the wild card yet again, and not just because of the timing issue; around every extubation attempt the protocol is generally to give them a burst of steroids to minimize swelling and to give them the best chance to succeed right off the bat. As I've mentioned, there are substantial risks in systemic steroid use. The two big ones are compromising brain development and disrupting the adrenal system (the stuff in the body that makes your own natural steroids). To minimize the danger, doctors don't (generally) give steroids longer than three days consecutively, and they don't like to give a burst any sooner than four weeks after the last one. That's not a problem, as his last burst went with his last extubation attempt, but if they do eye surgery they would also want to give him a steroid burst, which would mean that the extubation afterwards would happen without the benefit of the 'roids. So again, the eye surgery could change all the calculations. But I have some hope that he can duck the eye surgery based on the comments of the eye doctor, and if so, he'll get his shot at extubation next weekend.

Woody has also been cleared to listen to music now, which we love. Maggie has brought in her mandolin and plays him songs, and he actually seems to like it. I imagine that he might associate it with his time in utero, as she played a good amount with the instrument pressed up to her belly. And it makes the hospital visits generally more pleasant. We're also excited to play him some music on the CD player in his room now too.

Friday, August 11, 2006

Racing the leak (again)

There does seem to be nothing new under the sun, in the NICU. Woody's growing pretty quick these days; in fact he's just fractionally under six pounds (and may in fact be over now, when I go back in there to hold him). This means, however, that his trachea is growing pretty quick too, and since it grows while the E-T tube does not, he gets a leak around the tube that starts, after a while, compromising the efficiency of his ventilation. The machine itself measures the leak by what amount of the air is escaping out the leak, and it has to compensate for the lost pressure by increasing the amount of air it pumps in, but that eventually becomes impossible as the leak gets too big. So they have to switch the vent mode to a less sensitive setting until they have to re-intubate with a larger tube. Of course, here we are again waiting for clearance for another (his last, I'll remind you) extubation attempt, but we can't do that until his eye test next week at the earliest, and so we're watching the leak percentage and hoping that he won't need a new E-T tube before we can try the extubation, because every new intubation is a traumatic procedure that can damage the trachea, damage the vocal cords, and perhaps introduce infections as well. So we don't want to do that again.

Right now his leak is running between 30-45%, which is marginal to keep him on the best vent setting (PSV-VG, for those following at home; I'm not sure what the PSV stands for but the VG is for 'volume guarantee,' and it allows the flexible increase of volume with every breath described above). It will undoubtedly increase steadily from here, but we'll just have to react to it.

I think he's doing quite well overall. When I stepped out of his room just now his oxygen setting was down to 34%, which is about as good as it's been in the last two months. He's also been cleared recently to sit in a big plush chair for awhile a day. I have not seen this yet, but when I do I assure you I'll post pictures. Thanks for the support again; I know it can be pretty hard to maintain compassion and sympathy for such a long period of time. I will point out, as well, that we now have an Amazon registry for young Woody, posted on the sideboard, should people be inclined to get him something*. Thanks again.

*Why yes, I do feel a little rude and ooky for pointing that out. Thanks for noticing! On the other hand, having a wee little preemie has sure messed with things like, oh, having a shower and stuff, and we're at a loss for how to come up with a bunch of stuff we need when he does come home. So I'll just point it out and leave it like that.

Thursday, August 10, 2006

Managing some tantrums

Today was one of those days when nothing was supposed to happen, nothing did happen, and it quickly just passes into the general ether of lots of days in the hospital. It was day 90, actually, something right around one quarter of the year; one quarter of the earth's rotation around the sun, one season, one hell of a long time. And yet, it keeps on going. I labeled this the "summer of Woody" a while back, and the summer of Woody has been a hot, long, up and down affair, and even though the hottest part of the summer may be over for us in Minnesota, the summer of Woody is not likely to be over until there are flakes in the air.

I've been hair trigger on telling the nurses and doctors when I think Woody's getting sick ever since his UTI a week or so ago, and before yesterday I was beginning to think that he was getting sick again. However, I am finally convinced that he was just a little shagged out from a couple of hard nights and the eye exam, as he has been very awake, very feisty, and very strong today. In fact, he has had a number of nasty little temper tantrums recently, and figuring out what the irritant du jour is quite ~entertaining~. Sometimes it's his pants that need changing, sometimes he's uncomfortable, sometimes he's just pissed at the tube in his throat. Or like just now, when I saw him get red in the face enraged because he couldn't kick his hiccups. Poor kid.

I do have to say that I'm very happy to see him really awake and feisty, because when he's like that I know that he's feeling well enough to react and fight, and that makes me feel better. So go ahead and thrash, little man, and we'll see what we need to do to make you more comfy.

Wednesday, August 09, 2006

No surgery (yet?)

So, the long awaited eye exam happened today, and while Woody's eyes have now progressed a bit farther into stage II retinopathy, they are not to the point that will require any surgery, at least not yet. He's still classified as "high risk" for surgery, but this is because of his low birth weight and gestational age at delivery, and not so much as the way his eyes are progressing, which is considered pretty good. To illustrate, I'll just go ahead and blatantly steal some bandwidth from the classy, and use a diagram of a stage III retinopathy kid to show what is and is not happening.

Referer-blocked by

What you see above is a preemie eye. The bottom is the retina, and it's showing how the blood vessels grow from back to front (top) of the eye. Retinopathy manifests itself by a line of scar tissue that forms between the back and the front, and it can stop the further progression of the blood vessels ahead of the scar, which is what is happening in the (stolen) picture.

Where the blood vessels are stopped by the scar line, they tend to multiply rapidly and cause more scarring and potentially, loss of vision. Woody's eyes, however, while they developed the scar line (as seen above) are doing something more promising than what you see, which is they've managed to start pushing past the scar line and developing normally on the other side of it. This, along with the fact that he's only a stage II instead of progressing on to stage III (threshold disease) suggests that he may be able to duck the need for surgery, which would be very nice.

I managed to sit in on the eye exam today, which was fascinating but very disgusting (go ahead and skip ahead if you're squeamish). First, they have to prop his eyes open with these cruel looking curved metal instruments, which I swear look like little rusty bent paper clips (NB: they emphatically denied that they were rusty). Then the doctor had to get his eyes looking the correct direction, which in one case meant that he stuck a (presumably sterile) q-tip halfway to his hypothalamus to point his eyeball correctly. Then he shined a very bright light straight in there* to see what was going on.

The net effect of all of this is that we're waiting another week to see if he needs surgery. I am actually liking the uncertainty in one sense because it gives him another week to improve and not get a trach. By the way, his blood gas test this morning turned out pretty much like the previous few, absent the really good one Sunday, so it's probably going to be ammunition for the Pessimists. All that being said, I talked to the other pulmonologist today, who is still reserving judgment but is still coming down on the side of the Optimists, mainly because he thinks the previous extubation attempt didn't give him a fair shake owing to the earliness of it: the later a baby gets gestationally, the more they will show the true character of their lung disease and how they'll react to being off the vent.

So again, to sound the boring mantra, we will wait and see.
*Every time I see an eye doctor I wonder about this. We always hear about how you should never look at a bright light source, and the minute you get in there they're shining a million candlepower straight at your fovea. It's like how you hear that you're not supposed to pick at your teeth with any really hard surface, and then you get into the chair and they start rasping at your dentition with tungsten picks. I mean, come on. A little consistency!

Tuesday, August 08, 2006

The (boring) suspense continues

Well, all that and some sort of "emergency" managed to delay Woody's eye test until tomorrow. I try to not get too unhappy at any delay; after all, there are probably more immediate crises that are behind them*, but this is a pretty serious condition we're dealing with, so hurry up with that already.

I had rearranged my schedule to be there for the exam, so because of that I missed rounds for the first time in a while, but I did hear secondhand that there is now officially A Debate about what to do with Woody's vent status after the eye thing is cleared up. The nurse practitioners and the doctors and the specialists are now sort of divided into the Optimistic and the Pessimistic camps, with the Pessimists going for trach now and the Optimists pulling for another extubation attempt. I find it pretty curious that the people closest to Woody's care (nurses and the nurse practitioners) tend to be Optimists, while those that see him the least (the neonatologists and the pulmonologists) are more likely to be Pessimists. A notable exception is the split between the pulmonologists themselves; the one that was at last Friday's intervention is the prime Pessimist while the other one is at least a lukewarm Optimist, and has noted at least three different times in Woody's chart that he should get another chance at extubation.

Tomorrow he will get another blood gas test. This one is a little more important in my opinion than most, because however it turns out it will become ammunition for one of the partisans in arguing for Woody's next step. If it's lower than 62, it will be seen as evidence of continued progress, and will strengthen the Optimists' position; if it's higher, then the 62 will be explained away as an outlier blip on his overall CO2 processing, and it will be seen as further evidence that his lungs are too sick to try another extubation. I am heartened, among other things, by the anecdotal evidence I hear from nurses and nurse practitioners about how some babies have completely fooled them, showing even worse signs than Woody but successfully making a transition to CPAP despite it. My position, as usual, is with the Optimists, although I try to remain realistic about his prospects. However, I want very much to make sure that Woody himself has the final say-- his progress will dictate what we do, and I am just fine with that approach whatever it turns out to require.

*After Woody's delivery, Maggie was bothered by her epidural entry point, and the anesthesiologist was going to do a minor procedure to patch it up. So she got into the prep room and then was forced to wait for two hours as nothing happened-- I found out about this because it was only supposed to take thirty minutes and I went out for a burrito or something, and came back and she hadn't been wheeled back in, so I had to go find her. When I did, she was quite literally huddled up on her side in a dark curtained off corner of the general surgery prep room, with "E.R."-like sounds of trauma, distress, and mayhem going on around her. I threw a minor fit, got her into a private room with an actual door, and then we waited around for her procedure. Of course, after all that, it was canceled. The anesthesiologist, turns out, got called off because some poor sap in the cardiac ward had a heart attack and needed an emergency six-way bypass operation. So while I felt bad for Maggie having to wait around, I really did understand why the anesthesiologist didn't show up. Just shows how there are almost always priorities ahead of you in the hospital, and if there aren't, you're probably in trouble.

Monday, August 07, 2006

Night before eye test, yawn.

So it's another day-before-a-big-day for Woody; I've gotten a little used to these situations, and instead of being really nervous and excited and scared I'm almost, well, bored. Yeah, yeah, I know he's going to get his eye test and they're probably going to wind up doing surgery the day after or Thursday or whatever, and it's going to greatly influence which track of therapy he gets after that point. But on the other hand, I really don't think that anything that happens can surprise me, and it's not like whatever happens tomorrow will spin us off into the world of infinite possibilities like his last extubation attempt did, so I'm just more impatient for it to be over so we can move on to do other things.

Last week they said that his eyes were in stage 1 ROP, which doesn't sound that bad, but it is the fast-moving variant, so we're expecting him to need to be quickly treated; I'm just hoping the test won't show that he's in stage 4 or 5 or worse, because anything below that and the prognosis following surgery should be pretty darn good. After that we then will reevaluate so we know whether he gets another shot at extubation or a trach first.

And speaking of that, Woody's improvement continues on his respiration. His oxygen needs are trending farther and farther down; he spends more time in the 30s and less in the 40s and higher; we haven't seen another CO2 test yet, but I suspect that's still trending down; and he's just getting more and more feisty and alert and strong every day. The crew we saw at rounds today was generally more sanguine about his overall health than the professional pessimists* that populated his intervention last Friday, and the general tenor of it was that barring something unexpected, Woody will get another shot at extubation instead of getting the trach first.

So yeah, tomorrow is a huge milestone day and everything will hinge on it for the near term and all that stuff. Whatever. Woody will be ok regardless, I am confident.

*My current paradigm is that while I am optimistic, I don't want Woody's care decisions to be driven by my wishful thinking. That being said, the crew that met with us on Friday were, with the exception of the neonatologist, not exactly the professionals who have spent the most time with him. Following that, he's been seen by another pulmonologist twice, who is apparently of the opinion that if he maintains current trends, there is no reason why it isn't a good idea to give him another shot off the vent. After all, what's more risky-- leaving him intubated, which he has been most of the last twelve weeks, or poking a hole in his throat? I know that there are real concerns there, but let's make sure that's the right choice, please.

Sunday, August 06, 2006

Loose ends

A key part of the Friday intervention was the presentation of Woody's test results as it relates to his CO2 levels. Since he hasn't gotten this number down below 70 in six weeks or so, the reasoning went, it is pretty much a waste to try another extubation attempt. Apparently Woody has heard this and responded, because his blood gas test this morning has his CO2 down to 62. That's not all-- his bicarb is down to 33 (not great, but waaaaay better than 45), his chloride (electrolytes) are up to 102 (normal range), and his prealbumin* test, which measures how well he's dealing with protein-related issues, is almost up to normal this week, and last week it was pretty far down there.

In short, there is a greater than zero chance that the talk of a trach is yet premature. If Woody comes out of the eye uncertainty with declining CO2 levels, he'll get a chance to be extubated first.

Woody's eye exam is Tuesday, at which point we'll get the verdict on eye surgery. If he does get eye surgery, he'll get the ROP treated with a laser under general anesthetic, and then will need to be kept quiet and comfortable for about a week in very high oxygen sats (they said in the intervention that it would be at 100% oxygen; nurse M2 clarified this morning by saying that his sats would need to be held to close to that level. They'll probably set his alarm at 95% and let me tell you, that will be not so fun to hear the dinging and the beeping with that sort of parameter).

In short, the trach issue and the eye issue are hanging over our head this week, and until we know how that resolves we won't really know what's happening with him. He seems, subjectively, to be very feisty and strong the last couple of days. He's done with the strong IV antibiotics from his UTI and is now on an oral dose for a while just to make sure. And his O2 needs are really beginning to drop; he's now down in the high 30s/low 40s most of the time, which is very good (recall that we're comparing to room oxygen, which is 21%).

*I always wonder why they're testing for some precursor to egg whites, anyway. I wonder if anyone has said this before-- is an eggshell an albumin cover?

Saturday, August 05, 2006

Reality bites

Yesterday Maggie and I had a 'care conference' with a pulmonologist and a neonatologist and an NP about Woody's condition and the long term prospects and approach to him. This meeting was originally billed to us as an opportunity to meet the pulmonologist, who will be a key figure over Woody's next two years or so, as he is the specialist who deals with the development of his lungs and his chronic lung disease, but morphed into something that at the end felt a lot more like an intervention than a meet 'n greet.

The general prognosis for Woody remains positive. As they told us, the fact that we're talking about the issues that are in discussion is great, as kids in Woody's position (born at 23 weeks) are not usually alive (they said that of 10 kids like him born, 7 or 8 of them are dead and most of the rest are facing problems that are more debilitating than he's looking at). That being said, Woody's lungs are very sick, still, and it is the general opinion of the pulmonologist that his lungs are not going to be healed up enough, even in three or four weeks, to be able to survive an extubation.* Given his stage of life and the brain development levels, there are some big problems with keeping an endotrachial tube (ET) in his throat over the short term: first, there is the danger of damage to his subglottal area, which is problematic because surgical repair of this area is pretty major. Second, there is the risk of damage to his vocal cords by continuing to have him intubated. Finally, there is the ongoing risk to his development by preventing him from learning to suck and swallow and all the other things that he needs to be able to do with his mouth that he will not be able to do with the tube in. Adding in the risk that he will develop an oral aversion, which will make feeding nigh impossible without a long term feeding tube, the prospects of leaving in that tube as long as it would take to make a good run at an extubation are not favorable. The net recommendation, to boil down to the essentials, is to do the tracheostomy.

Of course, the fact that he's more likely than not getting eye surgery next week will throw a big monkey wrench into everyone's plans; the trach first, ask questions later strategy (extending my terms from a couple of days ago, I'll call it Track III) can't happen if he's going to surgery next week. In fact, it couldn't happen until, at the earliest, a week and a half from now. At that point, the whole analysis could change, if he figures out how to get rid of his CO2 better.

The other bombshell dropped on us was that Woody isn't coming home until, minimum, a couple of months after his due date (September 9). I had always thought that he would be out by late October, so this was a mild surprise. But, I have to admit, this was not something that I am terribly unhappy about-- I mean, consider it from my perspective; how scary is it going to be to bring a baby as sick as Woody home? Adding in the prognosis that his entire respiratory future may be decided by how healthy we can keep him the next two years, while his lungs finish developing, and the pressure is going to be severe (which is, I suppose, a roundabout way of pre-apologizing for shunning everyone, especially those with small kids, for the next couple of winters).

In short, the conference revealed some hard truths about Woody. I find it pretty helpful to consider the good news, such as the fact that his brain and neurological system has remained remarkably free of the common insults of preemie life. But we need to be prepared for a pretty rocky short term anyway. Of course, we are also aware that no one knows exactly what's going on with him; when we came in to visit today we saw a note from the other pulmonologist, who saw him earlier today, and it unequivocally noted: "make one more extubation attempt." Oh, well. I guess we'll figure it out.

*The O2 processing is one thing, and it's not the problem. The problem is the CO2 purging. He can't get his base levels of CO2 down below around 70 even with vent support, and without it they just inch up every day. As long as that remains true, the doctor thinks he isn't going to make any extubation attempt.

Friday, August 04, 2006

Hospital haikus

The hospital air
flows from one wing to the next
I know it too well.

Woody has new chub
but then he always seems to;
fat rolls are building.

The food pump alarms
are better than the others
vent beeps are the worst.

Primary nurses
should never be double booked
they should ask me first.

The folks in the lounge
talk really loud on the phone
do they have sick kids?

She seems very sad
but her kid goes home Sunday
cry me a river.

Woody's doing fine
not much change from yesterday
I'll keep you posted.

Thursday, August 03, 2006

Woody Reloaded

Now that it looks like that we have Woody's UTI in check, it's like we're just letting him recharge his batteries and get ready to make another run at extubation. He's getting a 'lab holiday' today (he was supposed to get one yesterday too, but they wound up poking him anyway to check his antibiotic levels), which in itself is a sign that no one is that worried about his day-to-day signs and that we're letting him grow and get stronger.

Speaking of, Woody's rate of growth is pretty phenomenal. He gained another 60 g or something yesterday, bringing him up to 2320, which is over four times his birth weight (565), about five and a half times his lowest weight (420), and for the first time, over five pounds (and two ounces). From the perspective of eating, digestion, and growth, Woody is doing amazingly well. He's also responsive, feisty, and a little ornery, which is very nice to see after how lethargic he seemed on Monday.

Our good friend Angie (Jack's mom) asks what the deal is with the trach and why he would need to be on it a year. It's a good question, because the trach itself does not require any time to be on it; it's only an access point to allow him to be artificially ventilated while being able to do the developmental stuff that the mouth allows. But the issue is that if he still requires ventilator support at the time he'd be coming home, he is not that likely to suddenly get off it anytime soon. While we don't know how long he'd be on it (yes, the year is pure speculation) we could be pretty sure that he'd be on it a while. At this point, he's pretty likely to be on some diuretics when he goes home, some oxygen, and who knows what else for care. We're also likely to not let him hang out with other kids much this winter, just because he'll be very susceptible to the narsty bugs that they can carry (my nephew Leo, whom I love very much, acquired the nickname 'the littlest disease vector' in our household this last winter).

Angie also asks what's up with possible surgery on the eyes. ROP is a disorder of the developing eyes; at birth, preemies have incomplete blood vessel growth between their retinas, at the back of the eyes, and the lens and cornea structures at the front. As they get older the blood vessels grow in from back to front, and a couple of things can go wrong in this process. These issues are lumped in under the term "retinopathy of prematurity." The most serious problem is that if the vessels form scar tissue, as the eye grows the scar tissue basically acts as a lever, popping the retina off the back of the eye, which would leave the kid blind. Laser surgery is useful because it can vaporize scar tissue and prevent this from happening, as well as getting rid of anomalous vessel structure, which can either allow good vessels to take their place or at least remove the bad vessels from obstructing or otherwise messing with the vision. ROP is awfully common in micropreemies, and the doctors are pretty used to treating it. I am confident that he'll be able to see, and if we need to get him some cute little glasses, so be it. We'll just have to suck it up!

In short, Woody is having a watch-and-wait day, and while I am tired of such days I am happier with them than with the days where it seems like lots of new, bad stuff is happening.

Wednesday, August 02, 2006

Urine luck!

We now know that Woody's little sickness is either a urinary tract or bladder infection, based on the urine cultures they took prior to starting the antibiotics on Monday. The good news is that his blood cultures have come back negative, which suggests that it's not anything more serious than that, and the culture shows that the bacteria causing the infection is the sort that is handled by the antibiotics he is currently getting, so he ought to be cured by his current treatment.

In other good news, his followup echocardiogram shows that while he does have a collateral bronchial vessel (an extra blood vessel running from his aorta to his left lung), it's not serious enough to do anything more than just re-check shortly before he is discharged. As it was explained to me, kids develop a number of blood vessels in utero that are ordinarily either re-absorbed into the body or otherwise unused by the time they get to term, and preemies often have some artifact vessels that go in odd places leftover from ending their gestation early.

As alluded to earlier, we are looking at the future now, and there is a basic split in approach to where we will be going in the next month. Track I is that we'd try again to extubate Woody around week 36 (one week from today) with the idea that if he was unable to make it on that attempt, we'd have another chance to try prior to term (week 40) before giving in and getting the tracheostomy. Track II would involve us waiting a while longer before making the extubation attempt, with the goal of letting him gather as much strength and build as much new lung tissue as possible prior to the extubation, in order to give him as much of a chance of success as possible. Of course, if this extubation attempt would fail it would mean almost certainly that he would be going home on a trach*.

However, we may not be able to actually choose which track we want-- if Woody has to have eye surgery next week, we will be more or less forced onto Track II, as he would need to be intubated for the surgery, and he would need time to recover afterwards before doing another extubation. Since we wouldn't really have time to make another attempt before week 40, we'd probably just delay until around week 37 or 38 to give him the best chance to make it as possible.

Let me make a comment, peripherally, about the trach. One of the reasons that I was so sad about Woody's reintubation was the fear that we would have to deal with this over the next year or however long it would be. Both I and Grammie have noticed that some people do not have much patience for talking about our fears on this issue. "Well, if that's what you have to do, suck it up" or something seems to be the gist. I understand this sentiment-- hey, I understand that after a while compassion fatigue sets in. I also agree with the underlying point. Of course, if that's what we have to do, we'll suck it up and deal with it. On the other hand, I think it's okay to point out that something just sucks once in a while, so if you're hearing me say that, the correct answer is something along the lines of "there, there," not "would you rather he just die?" Also, please remember that we have banned the phrase "it's a roller coaster ride." "You expected ups and downs, didn't you?" is also more or less right out.

I still have great confidence that all will be well in the long run, but it's hard to get an idea of what it will take to get us to this mythical and long-promised 'long run', and I am impatient for it.

*I have noticed that some people write this common nickname as "trake", but this seems a bit silly to me, even though I can't really explain why. "Mike" short for "microphone" also irritates me a little. It's a mic!

Tuesday, August 01, 2006

Another hard day

As the tone of yesterday's post might imply, it was a trying day for us in Woodyville. ROP-- check. Potential heart issue-- check. General listlessness-- check. I was in the hospital yesterday afternoon, and he just didn't seem right to me. He was not responsive and seemed out of it; he didn't flinch when we took his temperature (he hates the thermometer); he didn't seem to mind his diaper changes and cares, and he wasn't really seeming awake at all. But oddly enough, the thing that really made me know something was off was that he wouldn't grab my finger when I was holding his hand, and even when he's asleep, he tends to have a pretty strong grip.

So I told his nurse and the doctor on duty that something was off, and to their credit, they took me seriously and ordered some tests, and some of these preliminaries showed that he had some signs that he was fighting off some kind of infection. As a precaution, he was put on some wide spectrum antibiotics shortly thereafter. By the time we were back visiting him late last night, he seemed a bit more with it, and this morning he seems almost normal. I am beginning to be more confident that he's turning his status around and getting back into the general care plan, which is a relief.

Two things can still affect the short term plans for him. First, his ROP diagnosis shows that he has a fast moving variant of it, so if it hasn't slowed down by next Monday's analysis (I hasten to note that it's still not a severe form of it, it's just quick), we're likely to be having laser surgery by mid-week next. Second, his second echocardiogram is today, and we will know more about what that means by later today or early tomorrow. However, the cardiologist that examined him early this morning said that it's not the most serious possibility, because he has no accompanying heart murmur. Again, we will see!