Tuesday, September 27, 2011

Bloggus Interruptus

Listening to: MP3 on random. Just played this track which might be a bit of a Cure rip but I like a lot anyway. Now it has moved on to this.

Been a slight slowdown in blogging lately, for a few reasons. I've got a bunch of upcoming posts that I ruminate on and draft bits of in my head when away from the computer, but then I get home and just meh out, unable to summon the mental energy or remember with clarity what I had composed so clearly a few hours before. Even when the thing is perfectly mentally composed, often translating that into writing doesn't quite work. It isn't like I'm stuck for inspiration or anything, but focusing up to write this thing coherently can be a bit challenging of late.

One big reason for bloggus interruptus a couple of weeks ago was Charlotte needing to be hospitalised overnight with a food blockage in her throat, then a few unsettled nights after that while she took on an ear infection. The blockage we can't clear has happened once or twice before, but only once has she needed medical intervention to resolve it. The hospital visit highlighted one of the complete pain-in-the-arse things we have found about having a child with a slightly rare physiological layout (I don't like calling it a 'condition', makes it sound like a disease). You have to explain it again, and again, and AGAIN, to people, including health professionals and even they don't quite get it sometimes. Over the course of the evening Fi had to tell the story and background at triage, then to the attending nurse, then to the attending doctor, then again in the morning to the ward doctor. Another thing that is sometimes troublesome is convincing the professionals we do know what we are talking about and aren't mistaken/panicky, exaggerating etc.

Her visit to the surgeon yesterday to see if her throat needed another widening as a result of the blockage (it doesn't quite yet) was one of the few times that everyone in the hospital room was on the same page. Sometimes we feel like we need to write everything down on a business card, so we can hand it to people:

"She was born with TOF, had corrective surgery at 1 day old, no she isn't vomiting, no she isn't choking, she is just coughing up the food that won't get past the stricture in her throat, this is just something she does occasionally, not all the time, any questions?".

I especially want to throw one of those at the people who give us judgemental disapproving looks when she has a cough in a public place.

Meh, things could be worse. Other parents have to deal with a lot more, and even for what she has she is very lucky in comparison to others. If she had been born with the same thing only sixty years ago before the surgical fix was developed she would have died.

That's not very cheery. So to end on a nicer note here is a cool jet video. The Buccaneer was a British strike/attack design from the 50's built to fly from the Royal Navy's aircraft carriers. It was well designed and strong, and very good at what it did, so good that it outlasted at least three different design proposals for something similar for the land based Royal Air Force before being adopted for that service as well. Retired in 1994, one of the things Buccaneers were known for was flying very low, very fast to evade interception (something the RNZAF also excelled at while they still had the means incidentally). Most of this video was shot out of Gibraltar in the early 90's, and while being on the boat at 1:09 would be cool, the bit from about 2:20 is just mesmerising; it isn't often that ships look down on passing aircraft :).


Wildology said...

Hospitals are so hard. ..so is life sometimes. Modern medicine is worth it, though. Glad all is well!

Jessica said...

I'm glad she's ok!...but shell eventually need another surgery?...is it really invasive/long recovery? Regardless, hope she's feeling better!

Off-Black said...

Thanks you both. I know you both are expecting, so I hope this doesn't freak you out any :) She is an example though of how things can go quite wrong and still work out well. Basically she was born with a Tracheo Oesophageal Fistula, meaning her oesphagus wasn't formed right. No rhyme or reason, just a random thing that can happen (about 1/5000). At the top it ran to a dead end, and at the bottom it connected to her trachea, so she had no connection from mouth to stomach like normal. She had surgery immediately to fix it, and once fixed it stays that way. Since there is no peristalisis in the part of the throat that was stretched to make the join, and that part narrows, she can't swallow like the rest of us (like lying down or upside down). Most of the time it isn't an issue. There are certain foods to avoid (less as she gets older) The only surgical stuff she might need in future is a dilatation to widen the join site as she grows. She has had one of these before which I wrote about at the time here: http://offblack.blogspot.com/2009/07/yay-modern-medicine.html

If you look under the 'Offspring' label I posted a lot about the first few weeks of her life too. It wasn't fun, but it worked out in the end. Hopefully we won't get to compare notes on this, but hope is a powerful thing if you wind up in the neo-nates ICU. It will suck and feel like it won't end, but you won't be in there forever :)