Today had been another fairly up and down day. After seeing Alyssa initially respond quite well to her feeding schedule, Friday through Sunday had seemed like a regression to us. Sunday afternoon we seemed to get an answer insofar as the doctors suspected an infection of some sort was present.
Today, Alyssa had been in a fairly stable, yet lethargic condition, until about 5:30ish this evening, when she started to wake up and look around, quite alert. Since we hadn’t tried all day, Donna offered her a feed, and to our surprise (given that she’s been constantly fed all day) she was quick to find her way and start sucking quite well. Although she fed for maybe 3-4 minutes, it was the most interest she had shown in feeding since Thursday evening/Friday morning.
There was a bit of deja vu about the whole thing, it felt a lot like the turn around we saw in Launceston 2 days after her admission, when they had immediately given her antibiotics. We discussed this with the neonatal team here at the RCH and they agreed that it may have been that she had an undetected infection when we presented on Sunday, and that in hindsight, the full course of antibiotics might have been beneficial even though the LGH had seen nothing on any of their cultures after 48 hours.
This left us feeling vindicated in our belief that her sleepiness and disinterest in feeding was not normal for her, and that there must have been some underlying cause other than GSD.
We certainly don’t blame the team at LGH or here in any way, this is just one of those things that happen I suppose, but it’s just frustrating to have a set back like this when it’s so crucial to establish a proper feeding pattern for Alyssa. We will now know to be vigilant in future, and at the slightest sign of a repeat, press the case with the doctors.
This does however leave us worrying a little that she may have GSD Type 1b, which is characterised by an immune system deficiency which would leave her more prone to picking something up. We’ll talk with the metabolic team more later on about this however.
In other good news, I spoke to my parents this evening and they have booked to bring the boys across to see us Wednesday. We’re looking forward to seeing them after so long, and spending some quality time with them after not seeing them in the last couple of weeks.
After some of the guys from the Atomic forums showed us Minotaur bookstore yesterday, I’ve been thinking that it’s somewhere that Tristan might like to come and have a look at, they have some really cool Stargate things there that I think he’d like to check out. It’s basically a tram ride down the street from the RCH. We’ll also take the boys to the zoo, which at least Liam will like (Tristan will probably get bored of course) and there’s also the aquarium, museum etc. Unfortunately the Southern Star doesn’t open until the end of the month, but I guess they could at least go and look at the size of it, it’s really quite impressive.