up again up again

i'm burning the midnight oil again with the little guy. i'll be up until at least 5AM, so i figured i could take some time to do an update. i am sitting at the dining room table with all my quilt supplies out while Rowan sleeps in the living room...on the vent..unfortunately. we are still dealing with the aftermath of "the plague" (formally named human metapneumovirus) that hit our house a few weeks ago. we have been able to take Rowan off the vent while he is awake, and start giving him some food (which he will only eat if bribed, of course). but he's still getting tachypneic (breathing fast) and restless at sleepy-time, so we've been putting him back on the vent at nap and nighttime in hopes of a full recovery soon. the pulmonologist said that this particular virus that Rowan has is one that tends to "linger" for several weeks, so we're not really sure how long we will be dealing with the vent. it's a bit of a grey area to know when to put him on it, and when not to. the responsibility we have in our hands for this little guy as his family is amazing. i'll just say this: i'm an educated, licensed, registered nurse and if i made these kinds of medical decisions for my patients at work i would be in some deep trouble...TOTALLY out of my scope of practice. but at home, with my own kid, I am the one responsible for these decisions. feels strange to me. but whatever, we will give him the help while he seems to need it.

in other news, we are planning a trip to Children's Hospital of Philadelphia (i.e. CHOP) in April to meet with four different specialists there in an effort to determine how to best fix Rowan's airway issues so that he can eventually get his trach removed. I am still holding out hope that we can get it taken out this spring/summer despite the new diagnosis of subglottic stenosis, and this nasty virus we are still fighting. we will see what they have to say about it in the big city. I feel confident that the folks at CHOP are the best around for managing this type of thing, and feel fortunate to have them close enough to do day trips. right now we are working on scheduling four appointments in April (ENT, pulmonology, GI, and anesthesia), and then a scope (a procedure where they can look at his airway again) in early May.

well, that's all I can think of to tell you. so now it's on to quilting for the rest of the night! I might complain about lack of night shift nurses in our house, and therefore, lack of sleep for mom. but I am happy to have such an engrossing hobby to pass away the wee morning hours! you can see what I've been up to on my other blog here.

night-night!