Tuesday, February 10, 2009

Max's next stop

It was a big day at the NICU, so let's start with the most important thing: how Max's day was. His feedings were compressed to 75 minutes, starting with the 9 a.m. feed. On his new schedule, he is fed through the NG tube over a period of 75 minutes, then he gets 105 minutes (give or take) off before the process starts over again. By the way, this means Max is never really hungry as far as I can tell, and this reminds me of something my great-aunt of good Midwestern stock used to say: "We don't eat because we're hungry; we eat to keep from getting hungry." Max tolerated the first three 75-minute feeds well (at 9 a.m., noon, and 3 p.m.), with no spitups at all and minimal visible discomfort. He also got in some snooze time on my shoulder for two of those three sessions, and we had a couple of "play" sessions as well. The one before the noon feed especially showed Max at his best and brightest. He was quiet-alert, willingly did his exercises and stretches, showed some interest in a few toys, and enjoyed The Very Hungry Caterpillar.

The nurses attempted bottle feedings at 9 a.m. (with the dreaded vitamin-laced milk) and again at noon. Max was really not very interested, protesting more during the earlier one and just not showing much interest at the noon session. No one seems to see this as a sign of complete feeding failure and all assure us that this process takes practice and time (more on this below). While he has had a lot of time, he has had virtually no practice up until now. The speech therapist has posted a sign by Max's crib, asking the nurses to stop the by-mouth feeding efforts if he shows any discomfort or aversion. They don't want him to start flinching every time something approaches his mouth; indeed, they want eating to be a pleasurable experience (or at least have it develop to that).

Away from Max's bedside, the other main thing that happened today was a fairly major assessment of how best to proceed with Max's care. This has been prompted at least in part by our insurance company (more on this below). Andreas and I met with Dr. C, the general surgeon who would perform the surgery to control Max's reflux. The procedure would involve inserting a g-tube, allowing food to pass directly into his stomach from outside, and something called a fundoplication, aka the Nissen. The purpose of the meeting was to find out more about the surgery and its associated risks and outcomes in general, as well as the specific benefits and risks for Max. Also at the meeting was Dr. S., the NICU attending physician from the last few weeks and Dr. B., a fellow.

All of these doctors crowded into a standard consulting room in the main part of the hospital. It was disorienting to see the NICU team away from their home turf. They wore lab coats, which are forbidden in the NICU itself.

The bottom line is that Max will likely be discharged from Georgetown and moved to a rehabilitation facility, The HSC Pediatric Center, as early as later this week. It depends on when a space opens up. HSC used to stand for "Hospital for Sick Children" and now, in KFC fashion, stands for "Health Services for Children." The NICU team have only recently raised transfer to this facility as a possibility, and even then only obliquely. In part because I didn't know that much about it, I initially thought HSC was like a nursing home and dreaded having Max go there. Indeed, there is a chronic, long-term care portion of the HSC that seems a little grim.

However, the HSC has a special unit for babies like Max that are trying to learn how to tolerate compressed feedings and are also interested in trying their hand at some regular eating. This special unit is known as "The Preemie Express", and was founded by Georgetown staff. So our view now is that the HSC is a rehabilitation facility where Max will get more intensive attention from speech therapists and physical therapists than he is able to get in the hospital environment. Indeed, there are more therapists at HSC than in the NICU, and a central focus is providing a stimulating environment. If the high-powered NICU is a maximum security prison, the step-down NICU a minimum security prison, then the HSC is a half-way house. Max has almost paid his debt to society, and now needs to learn how to integrate with normal society. So we have a better attitude towards the HSC. But nothing will make the commute easier:

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Dr. C. described the fundoplication/Nissen procedure in enough detail, and its associated risks, that we now really think giving Max a serious shot at getting on top of his feeding is worth the time. Andreas pronounced the surgery "barbaric", and "like mutilation". Dr. C. agreed, but also pointed out that in typical cases it works 95 % of the time. It seems that no better alternative has been developed in the 50 years since Rudolph Nissen first described it.

In brief, Max doesn't currently satisfy any of the four criteria that would require an immediate Nissen: failure to thrive, extreme acid damage to the esophagus, recurring aspiration, and what the medical literature delicately describes as acute life-threatening events (ALTEs) related to aspiration. If Max gets a fundo it will be because he needs to be tube fed and he has reflux. Simply inserting a g-tube will only make his reflux worse because it distorts a feature of the stomach with the only-in-anatomy name of "the angle of Hiss" (or is it "angle of His"? textbooks disagree).

The Nissen is complicated: it involves removing or dissecting structures such as blood vessels attached to the stomach, spleen, liver and esophagus, as well as constructing a collar around the base of the esophagus with dissected stomach tissue. This is why Andreas views the surgery as "barbaric". With such a complicated surgery, several different types of severe complications are possible, both in the short and long term. One big risk is that the surgery will simply ultimately fail to control Max's reflux, leaving us where we started, but with an abnormal stomach, spleen, esophagus etc.

The general failure rate is low, on the order of 5%; however, among children who, like Max, have a neurological problem, the failure rate is astonishingly higher. As many as 1 in 4 Nissens on children with neurological problems fail. No-one understands why this should be the case. Of course, "neurological problems" encompasses a broad spectrum of problems, including hypertonic babies, hypotonic babies, spastic babies, and babies with uncontrolled seizures. We think that Max is at the fairly mild end of this dreadful spectrum, but he definitely has hydrocephalus and has shown difficulty in regulating his autonomic nervous system.

The NICU team feel that Max is making good progress with the compressed feeds and his new medication regimen (this has only become clear in the last few days), and feel that he has the potential to avoid the fundoplication and perhaps the G-tube. The options essentially boil down to:
  1. Schedule the Nissen and g-tube surgery to occur immediately;
  2. Plan to discharge Max to home in 4-5 days;
  3. Plan to discharge Max to the HSC for continued feeding therapy, as a step either to transitioning him home or as a last chance before a Nissen.
Given the risks of the surgery and Max's recent progress in feeding, we ruled out (1). Given the extremely unlikely outcome (I think we can say impossible) that he will be stable enough to come home in 4-5 days, (2) is out of the question. So we are left with option (3). Though we have never set foot in the HSC, Andreas and I increasingly see Max's moving there as a positive move which will benefit him.

In the end, the insurance company forced our hand: They told GU Hospital today that they stopped paying Max's bills as of February 1. You would think that Andreas and I would have been overcome by the vapors, given the daily rate of roughly $10,000 charged by GUH. Reasonably speaking, it will be a few days before Max can move to HSC, leaving us with an out-of-pocket bill of...well, you can do the math. Let's put it this way: college tuition is starting to look cheap. However, we trust the NICU case managers and directors to convince the insurance company that although ex post the decision to move Max out of an acute facility on Feb. 1 may have made sense, ex ante that was not at all clear.

Even though Max is in the low-intensity NICU, his nurse tonight and for the next four nights is the sainted nurse B. She reports that Max spit up only a little earlier this evening (at the same time he did so in other recent evenings she has had him), and that he does seem to be doing better on his medical regimen. She will keep a close eye on him.

Finally, during the Great Hirschsprung's Debate of December, Dr. C. took me aside and told me that his intuition was that Max didn't have Hirschsprung's disease. (Several members of the NICU team were on opposite sides of this debate; Andreas kept a running tally.) Today, Dr. C. said that his clinical intuition was that Max would get the hang of compressed feeds at the HSC and we would be able to take him home without surgery, albeit still tube-fed. As Dr. S. pointed out, teaching a baby to suck-swallow-breathe can take months. But once his feeding schedule is reasonable, and he's not likely to suffer an ALTE, those months can pass at home.