Tuesday, December 27, 2005

Hello, Baby! Goodbye.

23 weeks, male, mom had prolonged rupture of membranes and chorioamnionitis - an infection of the fetal membranes and amniotic fluid. It doesn't get much more grim than that in the NICU. This baby has about as much chance as a snowball in Death Valley in August. The perinatologist's recommendation was that we simply do nothing. The parents want us to do "everything possible" and that's what we are going to do. The parents cannot possibly understand what "everything possible" means - or why we do it reluctantly, but with all possible skill.

It's not my favorite part of the job, this fending off death for a few hours until there is simply no more to do. Even more difficult is facing the parents and trying not to destroy their hope -- but trying harder still not to offer them hope that simply does not exist. They want so much for me to say "yes" when they ask if the baby is doing better now. He's not really. He looks it, but I've seen the lab results. I know about the unofficial, but devastating head sonogram - the docs haven't shared that with them just yet, so I dance quickly away from that minefield.

I see the dark spots - the petechiae and hematomas that result from the overwhelming infection that has destroyed most of his clotting factors and platelets. We're replacing fluids, platelets, red cells, electrolytes - but not as fast as they're leaking through his gelatinous skin and being destroyed by the infection. I handle his tiny limbs as gently as possible so as not to cause any more damage, but I must turn him frequently, because lying too still causes his head to flatten. I titrate his dopamine and give more boluses of saline solution and sodium bicarbonate to sustain his blood pressure and reverse the acidosis that will surely kill him if it is not corrected, but I know that his serum sodium is rapidly rising -- approaching dangerous levels and soon there will be no more to do.

An aunt comments that this place is filled with angels. I pause a moment and realize that she is right. It is alway so when one of these little ones hovers between life and death. Perhaps it is always so and I am most aware of it at such times.

With great reluctance, I try to start an IV in veins almost smaller than the catheter, because we must give insulin now, and it's not compatible with the fluids in the existing IV lines. I call the doctor to do it, because I cannot bear to try a second time when my first attempt fails. She is as reluctant as I, but there is no one to whom she can pass this. She succeeds on the second attempt and we are able to continue our efforts to postpone the inevitable.

I leave in the morning knowing that he will not be there when I return less than 12 hours later. My husband asks how I feel about this baby dying. My answer: I'm sad for his family, but happy that he has moved on to a better place.

Tuesday, December 06, 2005

I'm not exactly proud of myself

But I'm not really sorry either.

Early last month, I had blood drawn for what was to be my very last CEA level. Hopefully ever. Yes, that's Carcinoembryonic antigen. It was 4.9 when I was diagnosed with colon cancer 5.5 years ago. The highest it's been since then was in the range of 0.7. Until last month. It hit a whopping 1.9. Normal, but still enough to worry me a little, considering that for the last 4 years, it's been < 0.5. All I really wanted was to repeat the test, but my internist referred me to the oncologist who, for reasons unknown to me, did not return my phone calls. For 3 weeks.

I dropped by his office on Monday and asked the secretary whether he'd gotten the messages. She said she'd see if he had a minute to speak to me. Half an hour later, she returned, chart in hand, to inform me that the doctor said I had nothing to be concerned about. The result was normal. Wrong answer. Even from him it would have been the wrong answer. I can read lab reports and I've been very much aware of the normal values for this particular test for more than 5 years.

"Probably nothing to worry about, but if you'd like we can repeat it in a couple of months just to be sure" would have been OK, but by the time a patient, or in this case former patient, calls 4 times and drops by twice, with no response from the doc, sending out a secretary to pat her on the head is definitely NOT the best approach.

I don't remember everything I said, but the gist of it was that I didn't plan to bet my life that he was guessing correctly. Pretty much what I'd told the internist who thought I didn't need that first colonoscopy. I also remember demanding a copy of my chart. The secretary said she'd have to talk to her manager and 20 minutes later ushered me back to speak to the oncologist.

That's how I ended up in the PET/CT scanner this morning. Overkill, I know but I hope the doctor was right.

Update, 12/13: The doc called today. He was right. Now I just have to worry whether the insurance company will consider this medically necessary. If I have to pay for it myself, it will be worth it for the peace of mind - but don't tell them.