Matthias: blog
Das Logfile über mein Leben im Netz.

Freitag, 04. Juni 2004, 21:05:14

My main concern these last few months has been Tim, born on 15 December 2003. Wow, he's almost six months old - how time flies!

Tim is a certified darling. He's babbling and waving his arms and grinning and crying and kicking as all babies his age do. His health is also quite good. We're very happy about all this, because it could be a lot worse. He's got a genetic disorder, trisomy 21, and that means his future health, physical and mental development are uncertain. But so far, so good - with a few notable exceptions.

Last week, Tim had respiratory problems because he caught a cold. Infections are very rare for breast-fed kids, but they're common for trisomy kids. So for a couple days, he was wheezing. On Friday night it got worse, and he even turned blue in the face when he cried.

If you're familiar with babies, you know they do cry every once in a while. It's how they keep their parents in check.

He had been in hospital for a similar problem in February, and it had been horrible. My wife and he lived in the hospital for a whole week! The medical staff took good care of him, really. But all this care is pretty exhausting: they show up every couple minutes to take blood, check blood pressure, check temperature, puff pillows, doctors with their students running in and out, babies in the same room crying all the time. And me running back and forth between job, household, the two older kids, and mother/baby - with all that stress, it's a miracle people actually get well! We hated it.

So this time, we tried to avoid hospital. After all, all he really needed was a bit of oxygen. A simple thing, isn't it? But you wouldn't believe the fuss they made at the hospital when our doctor called them. They simply didn't want to give us a bottle! They went on and on about biox, lab work, etc... we ended up buying tiny 8-liter "spray cans" with oxygen for over 60CHF, and made do with that over the long pentecost weekend. It wasn't fun. Tim didn't like the hissing sound, the oxygen mask scared him and made him cry even more. And we were in perpetual fear that the oxygen would run out before the weekend ran out.

On Tuesday, offices were open again, and we managed to get a bottle and gear from the Lungenliga. They were extremely helpful. They delivered the bottle to our place and gave us instructions. Tim liked the bubbles. Of course, by that time he was doing a lot better, the critical days were over. But we felt a lot better with that oxygen bottle.

If only we'd had it on Saturday, we would have spent a much better weekend. I'm definitely pissed at the medical administration apparatus. Why do they insist on expensive diagnostics and assorted mumbo-jumbo when all the kid really needs is some oxygen? They bitch and moan about health costs, but when it comes to actually doing something about it, they balk. They'd rather hospitalize a baby for a whole week than hand out a bottle of oxygen. It's insane.

Tim's still slightly wheezing today, but it's not very dramatic. I'm just glad we managed to avoid that damned hospital. And we'll keep the bottle for the next cold.