Catch 22 of the ICU

I'm starting to think they're strategically dealing their psychological one-two punch combos with the same kind of careful precision as their dosages and palpations. Not a handful of hours after I posted the last blog the hospital called us to say that Ford had been fighting a fever and his temperature was spiking dangerously high. As a cautionary measure they had sent samples from his incision, blood and urine to test for infection and started a course of intravenous antibiotics. The following morning, still waiting for news of an infection, they considered his symptons as greater than usual signs of withdrawal and so upped his sedatives. After a restless and troubled day, alternating between heavy, warm bundling and unwrapped cooling periods covered with cloths soaked in cold water to keep his temperature in check, Ford finally got some sleep.

This morning we were told his symptoms were less likely related to withdrawal or infection and more likely the early signs of heart failure.

While its likely less dramatic than it sounds, hearing them deliver those particular words was jaw-dropping and gut-twisting. In their considerations is the fact that Ford was supposed to have already transitioned from his infusion of Milrinone, which is a blood pressure medication that relaxes his vascular system so that the blood can move throughout his body, especially to his peripheral organs and limbs, with less difficulty (he's been on it as long as he's been in the NICU), to an oral medication called Captopril which would basically do the same job without an IV. They had been trying it out on him about a week ago, giving him the smallest dose they could, and decided to stop after noticing it was causing quick, sharp drops in his blood pressure which he wasn't reacting very well to. They began to think he preferred having a slightly higher than normal blood pressure, so maybe he wouldn't need it.

When they removed his pic line they stopped the infusion or Milrinone before he had been completely weaned off it, and one particular problem with the drug is the body's tendency to react badily to having it quickly stopped. He was on a pretty small dose, but they still believe they moved too quick and so he's back on the infusion as a preemptive measure.

We're still unsure what the new course of action is going to be. This has set him back a few stages in his recovery but from what I understand they are simply going to switch tactics. Giving his heart a little more help will let them try to wean the CPAP again (which was turned back up yesterday to give him a bit more help with his breathing). Since there is still the outstanding issue with his paralyzed diaphragm and the potential surgery, they are going to try and resolve that before they see if his heart can cope on its own again.

I feel increasingly daunted by the circuitous and labyrinthian challenges Ford's been facing the longer he stays in the P/N ICU. When he was checked in all he had as a bum heart, certainly it was an otherwise fatal condition, but now, after everything that's been done for him he's still got his bum heart (with a temporary fix to buy him some time), a paralyzed left-diaphragm, an addiction to opiates, a blood clot in his left leg, a compromised set of vocal chords as a result of prolonged intubation, and an emmaciated body that's been sliced and punctured and poked all over. While I realize there are side affects to every treatment he's recieved, and while I am also blown away at the talented and comprehensive juggling act the doctors perform in balancing all of this over a tiny little body, it is hard to accept that he is effectively a captive patient here, that orders for his care are doled out each day and we politely consent to them because we are basically ignorant, overwhelmed by the immensity of it all and only dimly aware of what is necessary and/or good for him. And through it all there are these moments where he opens his eyes and stares at us and we hold his hand and stare back and think look at this, look what we made, and look how strong he is... but if someone were to walk by and trip the power cord out of the wall he would be dead in a matter of hours.

That's obviously a bit melodramatic, and couldn't really happen either, but it's hard to not think that way when the ups and downs come paired so close together. We often end up feeling pretty blue when the day before we felt like a million bucks.