A Little Venting

Today was a bit discouraging. Andrew behaved himself last night and this morning, aside from some understandable oxygen desaturation when faced with a seriously dirty diaper and a chest ultrasound. The ultrasound was to check out his heart, because his pulse has been running a little high....the results were normal (no obvious problems). He's also been getting daily chest x-rays to keep track of his left lung. It's definitely inflated, and seems to not be doing anything useful, but hasn't hyperinflated to the point of pushing his heart into his right lung.

When we arrived, his heart rate was high, and stayed high for quite a while. When it finally started to come down, so did his oxygen saturation. When they turned up his oxygen to help his saturation, then his heart rate spiked again. It was a very odd phenomenon, because these would be normal results if he were upset and causing problems. However, his eyes were closed almost the entire time, and he didn't look particularly upset. It's tough to watch the numbers climb and the alarms go off, without having any idea about the cause. It's likely due to the decrease in his sedation, perhaps combined with some steroid reaction. They cut his sedation dosage in half, so it may take him a few days to get used to it.

His erratic behavior combined poorly with my lack of sleep from last night and put me in a pretty bad mood. Standing there at his bedside, hearing the alarms go off and trying not to fall asleep, it was hard not to get discouraged. Glancing around the NICU, it's painfully obvious how little progress Andrew has made in the last couple of months. The doctors have repeatedly told us that this is a long-term process, and that we have to focus on month-to-month progress rather than day- or week-long time scales. Well, he's definitely no better than a month ago...on the contrary, he has more medication and artificial nutrition, more lines and wires for IV drips, and significantly less stability. At the end of August, he was behaving pretty well, strong as a bull, sprinting for nine hours a day, and preparing to be extubated. Now he's been asleep for a month, all his muscles have atrophied, and he's having unexplained and erratic tachycardia (high heart rate) and high blood pressure. Combine this with what we know about his compressed right bronchus and useless left lung, and it's a bit sigh-inducing. Let's just say that it wasn't a pleasant hospital visit.

NOTE: Just before we left, his numbers started to level out, assisted by an extra dose of Ativan. He's been fine since then, all his blood tests have looked good, and he's behaving much better than he was earlier. The breathing rate, pressure, and oxygen levels being provided by the ventilator are all better than they were two days ago. He's fine, and in the short term they're not concerned about him having problems too severe to control with medication. The rest of this post sounded very dire and grim....though I can't say we're not worried about his chances of eventual recovery, I don't want to worry anybody unnecessarily. I just needed to take an opportunity to unload.