Rowan’s feeding tube has been removed, so the only extra things connected to him right now are just sensors. Not a whole lot else to report… they’re exploring whether he has an underactive thyroid, and if that could be causing the seizures. He’s feeding great. He sleeps a bunch. His set-up was moved all of […]
Another fairly quiet day yesterday, mostly focused on Rowan learning how to feed in ways other than through his tube. He’s off of it almost completely as of this morning, only continuing to use it to receive one vitamin supplement. Today he was outfitted with his CFM to do a bit of further monitoring for […]
Today marks Rowan’s original expected delivery date, and as my Mom remarked this morning, “for today being the due date, he’s already had quite a life!” Weekends seem to quiet down a bit around the hospital, with testing and poking and prodding and whatnot mostly confined to weekdays. Still, Rowan’s progress continues. He’s feeding more […]
Late morning yesterday Rowan’s breathing tube was removed and he’s completely breathing on his own. Save for three monitoring sensors adhered to him and a nasal tube for feeding and medication, he’s completely free of the all the medical apparatuses that made us feel so fearful and powerless a week ago. This has led to […]
Yesterday’s MRI went very well by all accounts so now we wait for results. His urinary catheter is out, the EEG has been removed, and he’s off all of his IV lines. Each bit of progress is evident in so many ways: fewer beeping machines by his bedside, a bit more movement from Rowan, and […]
With Rowan less sedated, all of his nutrients (now in the form of breast milk), medications, and vitamins are being delivered orally through a tube to his stomach, so yesterday they removed a bunch of lines that were previously used to deliver those directly into his bloodstream. The lines were also used for drawing blood […]
We finally got official confirmation last night that there have been no seizures registered since Sunday, which is a huge relief. Rowan is completely weaned off of midazolam, which was keeping him heavily sedated, so we’re seeing more activity in the form of small twitches and movements that you’d see from any healthy baby. He’s […]
Still no word on any seizures since ~6am Sunday. We’re hoping he gets in for his MRI at some point today. They’ve gradually been lowering some of his more sedative treatments, so he’s starting to be more responsive – wiggling toes, etc. Wiggling toes! Once he’s more responsive they’ll start giving him small doses of […]
The McMaster team performed a lumbar puncture to diagnose if the cause is a bacterial infection. Initial results indicate no infection, but they’re expecting more results in 48 hours when the cultures have time to grow. His blood work got sent away to the US for genetic testing today, and we’re expecting results from that […]
Rowan seems to be stabilized for now. There’s been no reported seizures since ~6am today with the latest medication. They’re switching to a different medication that works almost identically, but with fewer side effects. It’s newer and relatively untested on infants, though, mostly on older children and adults. Right now the milestone is to get […]