Monday, January 10, 2005

You might want to get a beverage - this is going to take a while.

Will is the proud new owner of a pigtail chest tube. After needing to be tapped for the third time in 36 hours, it was clear that the chylothorax was getting worse and that something needed to be done to keep that area drained. So, after a few weeks of debate among members of the neonatology staff and many conversations with us, they decided to put one in. Will was tough as always, dealing with it just fine. It seems to be doing the trick. They've been taking about 40-45cc out of that area with each recent tap, and about that same amount came out again as they were putting in the tube.

The "pigtail" aspect of the tube is an accurate description of the end that is inside his pleural cavity. It is a small, soft rubber tube with about an inch or an inch-and-a-half that coils at the end. The coiled end has many small holes in it through which fluid can be pulled. It's sort of like the reverse of one of those watering hoses that has all the holes along it to better distribute water on your lawn. With Will, the holes will allow fluid to be pulled from a larger area rather than just through the end of the tube. The tube is hooked up to light suction which will pull the fluid out continuously, so Will won't need to wait for the fluid to build up enough to compromise his lungs before it is taken off.

And he does do better with the fluid gone. Last night his x-ray looked bad, with the left lung not showing much sign of working at all. After they tapped him, the x-ray looked great, the lung was as full as the right one and working well. The doctor who did the tap last night said Will responded immediately; Will's oxygenation was climbing steadily as he drew off the fluid, and he needed less and less support because his lung was filling with air at the same rate the fluid was coming off, it seemed. The fluid isn't in the lung, just around it, putting pressure on it and collapsing it down.

It might seem to be a no-brainer to put the tube in and keep him from being compromised, but it was definitely a matter of weighing risks and benefits. On the plus side, it is in once and requires no further needle sticks. It will keep the area continuously drained. On the other side of things, however, it has a higher risk of infection because he now has a foreign body sticking out of his side, it is said by small children who have them to be fairly uncomfortable on an almost constant basis and might clog and need to replaced. But the needle sticks Will was getting with increasing frequency were no picnic either, and each stick carried its own small chance of infection as well. We hope this was the right move. It seems so right now, and now we hope that having that pressure off his lung and heart (which gets pushed on by the displaced lung) will help his blood flow, which should help to keep the fluid in his capillaries and out of his tissues and thereby help to decrease the edema that has him so puffy.

They've also decided to increase his nitric oxide again. He had been getting that to combat pulmonary hypertension. The last check found that he no longer had that, so they have been weaning it down. But they took a hard look at his status over the past week or so, and found that last Tuesday was his best day in a long while. That was the point at which we thought the chylothrax was drying up. So, they have decided to try to get his various medicines and settings back close to where they were that day in the hope of getting him back to that good place. His nitric oxide was still high at that point, so they're bringing it back.

That and the chest tube were today's big things. Tomorrow might bring an increase in the octreotide or something else. Dr. Colaizy seems to want to limit the big things that they do to Will each day so that he can reasonably recover each time before they start in again. That seems like a good plan, and so far he is responding. Yesterday's big things involved tapping him more frequently and increasing his dopamine. That was to keep his oxygen needs more consistent and to help him pee off some of the fluid. It worked on both counts, particularly the latter. He had more in one diaper overnight last night than he'd had in the previous 36 hours (42cc for those of you keeping score at home). He continues to do well on that today. The result is that he only gained 6 grams of weight between yesterday and today. That's a move in the right direction considering his gains over the past week or so have been between 50 and 100 grams each day.

None of this is going to happen overnight. Even with fantastic diaper filling and a turnaround on the way his capillaries are holding fluid, it will take considerable time for him to get back to his fighting weight. They estimate that he has as much as 600cc of extra fluid on him, so that's a lot of 42cc diapers. And he continues to take in fluid, of course, in the form of nutrition, medicine and blood transfusions. It seems like they're on the right course, but we must be patient. Same thing goes for the chylothorax. The chest tube will keep the area relatively empty, but that has little to no effect on the effusion itself. For that, we must hope the octreotide works, that bringing the nitric oxide back online will help, that it will just dry up on its own or some combination of all three of those things. Such patience isn't easy, and we're not the ones so swollen with fluid that we haven't been able to open our eyes since Christmas Day. But we don't really have a choice. At least it feels like we're moving in the right direction again. Only time will tell.


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