Brandon is hot tonite.

We were hoping we could dodge this one for him, but his chest has gotten progressively more and more junky this week, and tonight he has spiked a fever.
He's at 102 and rising.

At this point he's tolerating continuous tube feeds but has left us very little wiggle room as anything higher than 80mls/hour starts to come back up - as long as we can keep him over 60ml/hr we are doing alright - but if he drops to or below that, we will be heading in for IV fluids.

We will see how the night goes, and see where he's at in the AM but if he's still getting very hot between motrin etc, we will be going in regardless of feeding.

He just has no tolerance of being sick like this, and the IV fluids tend to get him over the hump fairly well.

Every time he gets sick, we end up with flashbacks of last winter when he got a pretty mild virus (fever + sore throat - nothing horrible) and had a major neuro regression - stopped walking for almost a year. it was awful. we're pretty sure the regression was largely because we all weren't agressive with IV fluids, and they kept trying to wean him off before he was ready... The upside is that now we know better, and his records clearly state that the goal is no longer to 'treat' dehydration, but to prevent it from happening in the first place.

Now we just have to hope the fevers dont last forever like they did with Tyler.

I'm tired just thinking about the coming week.

wish us luck.


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