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!

holy crap i didn't know if i'd ever blog again...

life got SO busy, and since my last post, we bought a house, moved to a new town, AND got married, among many many other things. but as a new year's resolution, i decided to get back into quilting, and participated in my first online quilting challenge through project quilting at persimondreams.com...

simple squares crib quilt

...which led to me reading a few other people's blogs. which led to me remembering, hey...i've got my OWN on of these things! so rowan's napping and here i am!

as the months go by, and rowan gets bigger, stronger, and smarter, i hope to make this less of a "life-with-a-medically-fragile-child" blog and more of a "hey-look-how-much-we-rock" blog. (hey, i think the world would be better if everybody bragged a little bit more about all the cool shit they do.) but in the meantime, things really ARE looking up. rowan hasn't been on the vent since sometime in I think October, and he did pretty well with all his capping trials (which is where we purposely plug off his trach to see how he handles it). it did make him a little winded, and when he fell asleep, he would sometimes have some problems, so I kind of wondered what was going on there. this past thursday, he had a bronchoscopy (i.e. a camera down his breathing tube to look around down there), and we found out he does have some airway narrowing above the trach. this is not unusual in babies who have experienced long-term intubation, due to scar tissue, trauma to the airway, etc... the doctor said it wasn't severe, but that it would probably need intervention. so I'm waiting to call his pulm nurse practitioner on Monday to see what we do next. I think it will be schedule an appt with an ENT (ear-nose-throat doctor), who would be the one doing said "intervention." Anyway, not exactly the news we were hoping for, but hopefully just a small bump in the road towards decannulation. in the meantime, Rowan is walking, talking, even eating a little too (when we bribe him with yo gabba gabba episodes) so i find it hard to get too depressed about it all.

the yo gabba gabba bribe method.

i could definitely type a lot more about all the stuff that's happened between last summer and now, but it might get a bit boring, plus i want to go organize a closet before Rowan wakes up and starts terrorizing the house again :)

tah tah for now,
 love erin

the one you feed

obviously, free time is not something I have a lot of, as evidenced by the fact that I am typing this post on my iPhone while rowan sleeps on me (some days the only way he will take a nap is if he's lying on top of someone). but I really am trying. I watched a documentary about Anne Leibovitz last night, and she said something to the effect of just having talent is not enough. talent is like a baby, you have to feed it and nurture it so it will grow. this struck a chord with me, so last night while Rowan was asleep, I did some normal stuff - cleaning, teevee watching, but I also did this    ======= >











I was inspired by an awesome book that billy bought me for christmas:

and I also signed up for a crafty online class here:

http://dispatchfromla.typepad.com/dispatch_from_la/rotdoci.html

which I am thoroughly looking forward to exploring this evening when the baby's asleep (in his crib this time.) but don't get me wrong, there's nothing like the cuddles I get from this sweet little peanut. He will always be my top priority, but occasionally I hope to get a chance to "feed" my other babies too ;)

~~~~~

a wise old man was teaching his grandson about the two wolves at war within us all. one wolf is good, fair, brave, honest, and full of hope. the other is selfish, greedy, angry, and full of fear.

"but grampa, which wolf wins?" asked the boy.

"the one you feed," the man replies.

native american folk tale