It’s been a great day. Matty’s finally made it to CPAP again, and doing really well on it. He’s definately a lot more stable with his oxygen saturation on CPAP than on the ventilator. He’s also still going really well with the feeds.
For halloween, Mum and Dad thought they might dress up Matty’s little house [...]
Well, it looks like Christmas has been postponed.. Matty had a couple of ‘profound desats’ last night which, coupled with a really busy ICU, means that they’re going to try for CPAP tomorrow. Ah well, what’s another day in the grand scheme of things. The good news is, Matty’s eye test today went very well, [...]
It’s kinda like the night before christmas. There’s such an anticipation and hope.. expectations and desires. We have to be really careful not to create unrealistic expectations because that could lead to breakdowns, but at the same time we really need to be positive. Matthew’s very settled this evening and his oxygen saturation is the [...]
Thankfully, however, they’ve planned to take his out tomorrow. He was started on a small dose of dexamethasone today, and tomorrow, he’ll be back on CPAP. Of course, that’s not soon enough for Matty, who last night decided that he’d remove it himself. Yes, that’s right… he extubated himself… again. (In other words, he pulled [...]
So on my way home today, i popped in to see how Matty’s going… and he’s going really well. He was quite active… but in a different sort of way. Not an angry, agititated kind of way, that he is sometimes, but really quite comfortable. It was really great to see him that way. He’s [...]
Ok, so Monday is plan day.. and today, the doctors have concocted quite a plan. The goal, of course, is to see some major progress from Matthew. We’ve seen some really good progress from his belly last week and he’s still doing really well on those feeds. He’s now having something like 4ml every 2 [...]
As per usual lately, when we went to visit Matty tonight, he was swinging his sats around pretty wildly. After a little while, and a fair bit of “in isollete nursing” he settled down a bit though. Tonight, the major milestone was a new Harry Potter book. So far, we’ve read the first three together, [...]
I forgot to get a blog entry up yesterday… Sorry folks, I made a commitment to everyone to keep you all informed as to what has been happening, and i faltered. But don’t worry… I’ll ensure that this blog is kept up to date from henceforth.
So… the actual reason that this blog is here at [...]
Another pretty good day for Matty. He’s up to a whopping 7ml feeds every 4 hours too! Hopefully, we’ll see him start to put on some weight from all the food too. He actually lost over 100gms last night, due to loss of water weight from the diuretics, so he’s back to around 1.2 kg, [...]
What a fantastic surprise.. a chance to cuddle our little boy again. When Matty’s nurse tonight asked, quite out of the blue, whether we would like a cuddle, you can imagine the response. So Matty got to come out for over two hours! Furthermore, he had his best stats all day during those couple of [...]
