Tuesday, December 31, 2013

An update on my nephew

For those who expressed a concern for my sweet little nephew, an update. Things actually didn’t go so well while I was down in Melbourne. My little nephew was basically just vomiting back up everything he was fed when I arrived. And it was heart-breaking to watch my sister spend so long trying to feed him through a tube, then so long holding him upright afterwards in the hope of preventing it all coming back up, but then he would pull a sad little face and it would all come streaming out of his mouth, which was not great given that the goal was for him to gain weight for the surgery. But then they switched formula back to a previous one, and he seemed a lot better, except for the wind that is, and when he started screaming with the pain they remembered why they switched in the first place.

They’d also noticed that they could no longer put him flat on his back to change his nappy because he screamed and went blue and coughed. My sister had taken him to the child health nurse before Christmas who saw this and didn’t seem to think it a problem. But this has been the problem with this baby all along: nobody seems to know what normal is and my sister hasn’t known how much to just take as par for the course with the hole in his heart. But by the 27th my sister thought his breathing was way too fast, so they took him to emergency, and he was admitted to ICU. Then my sister got really upset because it seemed like she should have taken him in earlier, but it’s so hard to know.

Originally they thought he had pneumonia and heart failure, then they decided he didn’t have an infection, it was basically just his heart that was a problem, then his temperature went really high and they decided he did have an infection, then they discovered that he has VRE, which is that superbug that has been on the news, which he must have picked up at an earlier visit. (It was apparently only in the neo-natal ICU unit, where he didn’t go previously, but it seems he has it in his system anyway.) So, he is still in ICU down there, on a drip as they haven’t sorted out his feeding, and his temperature is erratic, but he is doing a little better, and he might just stay there till surgery. And I think my sister is actually a little relieved to have him there where he is on monitors and one-to-one care, rather than dealing with the anxiety of having him at home. Also, because they discourage parents from staying overnight in ICU (as basically there is nowhere to sleep) they have been going home at nights and catching up on all the sleep lost from trying to feed him every three hours (when the feeding took so long that there wasn’t much of a break between feeds).

I feel rather bad for coming home, but I tried to change my ticket and there wasn’t a seat available when I wanted one, then they decided to send my nieces to their cousins in Newcastle, where they were supposed to go for Christmas anyway, and only two people can be in ICU at any time, so there didn’t seem to be a whole lot for me to do. Also we really don’t know how long this might go on for, or when the need might be greater. This is the problem of living at a distance. If we were in the same town, I could be an ongoing support, but as it is I can only go down for concentrated spurts, and you have to decide when. My younger sister was already going down for a few days next week, and my Mum is ready to go if needed, so we shall just see how it goes.

So, I tried hard not to completely lose it saying goodbye to him in ICU (and wasn’t entirely successful) hoping to God it wouldn’t be the last time I saw him. We are hoping and praying that he can get well enough (and gain enough weight) for the surgery to fix the hole, and from there on it will all improve.

(I did have some fun taking me nieces out to a few things. Well, sort of. They got a MYER voucher for Christmas and wanted to use it, so I was mad enough to say I’d take them into the city on Boxing Day to the sales. Seriously. There was such a long queue just to get up the escalators, being manned by no less than three suited men saying things like “no pushing in”, that we were led off to walk up the fire escape. Never in my life have I seen so many people in a department store that big that there were long queues for escalators and people were walking the fire exits. It was insane. My nieces aren’t quite old enough to appreciate the culinary delights that Melbourne has to offer so I took them into the Lindt café, where it was relatively peaceful and we could sit down for a while. Then we discovered a shop called Minotaur “pop culture specialists” where they went crazy over all the Manga things and what not. The shop was full of teenagers and men approaching middle age walking around with head phones on. The appeal of that stuff is lost on me and I felt a little “out of touch”. Why don’t kids these days watch Anne of Green Gables?

Another day I was ready to take them to see a movie, when my sister decided to take my nephew to the hospital, so while I waiting for them to come out of the movie I wandered a few shops, and actually managed to use my own MYER vouchers on some new sunglasses (I couldn’t bear the thought of trying on Boxing Day), then I started getting texts from the hospital with the bad news. So the next day I took them to the hospital and then on the way home thought we’d try Brighton Beach. This was very pleasant until some of those extreme winds some of you may have seen on the cricket came along and whipped sand up till it stung and everyone on the beach fled like a swarm.

Anyway, I am getting good at borrowing strange cars (my brother-in-laws old second car is hideous to drive) to find my way around strange cities and pretending I know what I am doing. Last time I was down there I actually missed the right freeway exit coming home from the hospital, in peak hour, in the rain, then the GPS wouldn’t work, but you know, we survived and we made it home eventually.)

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