Decisions.

We saw Max today and were greeted to a much more energetic little boy. His O₂ levels were still pretty low (around 23-26%) so there’s still the expectation that he’ll get stronger with his breathing and take to having the ventilator taken away so that he can do it on his own. It’s hard to say for sure though. We talked to one of the doctors today and the feeling was that we can either wait for him to “get on with it” on his own strength or we can try a 10 day steroid treatment in order to have it potentially quicken the pace to non-ventilation support. The risks with both options is that the waiting method can lead to developmental delays and lung issues in the future whereby the steroids can lead to similar developmental delays despite them having altered the prescribed treatment to be less problematic than the way they did it before. Brienne and I are to make this decision, but we are both still a bit muddled on the idea. On the one hand, I want Max to be off the ventilation sooner rather than later, but don’t like the idea of steroids being used if they don’t absolutely HAVE to be. The fact that we’re given a choice makes me think that both options are equally crappy, so we’ll have to ask a few more questions to get a better feel for what we feel is best for Max.

It's all about the tubes

They tried to extubate him today. He dealt with it fairly well for about 45 minutes. The thing to remember here is that breathing on one's own is very different, and much more difficult than breathing with a ventilator. At around the 45 minute mark, Maximilian decided he had had enough and started having issues breathing on his own, whereby his heart rate would dip dramatically and his oxygen saturation would diminish substantially. None of this is out of the ordinary, but it was happening so often. required so much attention and was just so stressful on the little guy, that it was best to re-intubate him and put him back on the ventilator. This is definitely one of those steps backward after the few steps forward. He had a good college try at least. We'll now have to wait for him to regather his strength and get accustomed to breathing a bit better before they try it again.

It's merely a flesh wound.

We called this morning. He had a bit of a head wound. Well, wound is a harsh term. He is in a very humid, very hot environment and his head started to chafe a bit from being in the same position for so long. They’re giving him polysporin and are not worried.

We went to visit him. He’s awesome. He’s wearing clothing now, a tiny sleeper that looks cute on him and seemed very comfortable. He was still hooked up to the ventilator but was doing most of the work on his own. When he dips below 85%, he brings himself up without any help and this is a good thing. It’s still not at the point where he can do it all on his own, but they’re thinking that they’ll probably extubate him tomorrow at any rate. Hopefully,, tomorrow we can visit him longer as today was a bit of a quick visit.

PSV again.

Max is back on PSV today and staying around 27% FiO₂. He was tolerating it quite well. They’ve also given him steroids and will continue dosing him every 6 hours for a full 24 hours, where they’ll then try and weaning him off this type of ventilation all together. They’re talking about extubating him tomorrow (the 5^th of July). We didn’t do kangaroo holding today, but we did hang out with him for a while He’s super cute and seems to have a lot more energy than a week ago. Every time he hears his mother’s voice, he seems to try and find her by opening his eyes. He’s adorable!

A bit of weight..

Max is doing rather well again. Brienne got to hold him for a while tonight and we spent a good deal of time with him. He’s strong and breathing better (usually between 25-30% FiO₂). He poops a lot and pees a lot and he’s starting to look a bit chubby. Otherwise, it’s all normal and routine with him.

Pull pull pull

Unfortunately, we only got to visit him briefly twice today. The first time, we got to see him all snugly and cute in his little burrito-wrapped blanket. There was nothing major to report, as he was pretty much doing the same as before. The difference this time is that they’re lowering his O2 levels a bit more. Hopefully, this trend will continue, and hopefully, his weaning will go well.

When we visited him the second time, we had to wait outside for a while. The little guy pulled out his tubes again. Which is both funny and slightly frustrating. Mostly funny though. Otherwise, he’s doing well, they didn’t have to put him about 30% on his O2 after re-intubating him, so that’s a good thing. He was very alert when we were there, and I wish I hadn’t had to go to work so we could have enjoyed his company some more. His nurse mentioned that he had a “bug” but they weren’t sure which one yet. They don’t seem overly concerned though, so neither am I.

The Lull

Max was doing well today. We’re back to a “news lull”. Ultimately, he’s still doing rather well, with his breathing needing to get further along before they start to wean him again. He does well for his age, but he has a while to go before he can do it all on his own. I changed him for the second time today. He pooped all over my hand. He’s adorable.