big day tomorrow

billy and I have taken off work tomorrow so we can hit the road nice and early to take rowan to philadelphia for four doctor's appointments at CHOP (children's hospital of philadelphia). basically we will be in doctor's offices from 9AM until about 3PM getting Rowan evaluated by four different specialties (GI, ENT, pulmonology, and anesthesia) to see what needs to happen next to get his trach out. we may not come back with many answers, as a lot will depend on what they see during his bronchoscopy, which isn't scheduled until May. but i'm sure tomorrow will be a long day for all of us, especially the little guy, so happy thoughts, prayers, and warm fuzzy feelings are much appreciated!!!

jolene - my gay banjo

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!

the plague

well, we finally caught our fair share of the winter "blahs," and around here they are not to be taken lightly. what started with a headache, sore throat, and cough in my stepson continued on to my husband being laid up in bed with fever and not eating or drinking for a few days. after that madness ensued, I found myself pulling out oxygen tanks and supplies from the medical supply closet that I haven't needed to use for over a year for my son Rowan. but it didn't stop there. a few days later, after returning home from a dentist appointment to find him looking listless and tired but unable to sleep due to the work he was having to do just to breathe, I found myself setting up his ventilator (breathing machine) that has been in the closet for the past 4 months. let me tell you, that is NOT a good feeling. there were definitely some of mama's tears on those vent circuits that night.

since then, we've been back and forth to his lung doctors a few times, they tell us it is not RSV (the respiratory virus most dreaded by all preemie parents), and not the flu. but it IS a virus that tends to hang on for a few weeks and makes kids really sick. they offered to admit him to the hospital, but let me know that they wouldn't do anything differently there than what we are doing at home, provided he didn't get too dehydrated. well, it wasn't easy to keep fluids in him (despite the fact that I have direct access to his gut via the mic-key button), but I opted to try my best at home, because the hospital is just NOT a fun place (I always do my best to avoid it unless I'm getting paid to be there.) and I knew Rowan would get better faster at home. so despite our lack of home health nurses, we stuck it out in our living room. which means we have been giving IMC level hospital care to Rowan around the clock without any break until the home nurse shows up so we can sleep...and sometimes the home health nurse doesn't show up, and sometimes there wasn't one scheduled to begin with... so i guess it goes without saying I am one tired momma.

but i think it paid off, because today Rowan barely needed any oxygen at all, and I was even able to take him back off the vent for an hour or so at a time until he got tired and needed to be put back on. he was playful and talkative, and he even made a few little messes. I have never been so happy to see little toddler messes all over the play-room! he is also tolerating his food without gagging or wretching it up, so I'm gonna go out on a limb here and say I think he's turned the corner and is getting better. I have him back on the vent to sleep tonight so he can get some good rest, and then we'll see how tomorrow goes.

I am too tired to come up with a witty ending to this update, so I'll just say goodnight!

three ladies

i'm excited i was able to pump out a little art quilt this week, just in time to enter it in persimmon dreams "project quilting" challenge! we had a lot of other stuff going on, including hours on the phone trying to sort out an insurance/home medical supply disaster, dealing with highly inappropriate behavior coming from one of our home health nurses, a feeding clinic appointment, an outpatient EKG (for a two year old--not as easy as it sounds!), and a regular doctor's appointment. coupled with the usual work/clean/cook excitement that goes on around here, I'd say it's pretty amazing I got anything extra done at all! but here it is:

three ladies

the challenge was called "my favorite color," and the rules were to use only white and shades of one other color. i hate using white in my quilts, so it was not easy for me to do! but i'd say it turned out okay. other than the fact that i need a little practice with the binding part of things (see the wonky upper right hand corner). i was also excited to get to try out some hand embroidery techniques, and to use my free-motion quilting foot! and i suppose i should pause for a moment to express my undying love for a substance called "wonder-under," which has the amazing ability to turn any old piece of fabric into an iron-on. so basically, if you can draw (or trace) it, you can put it on your quilt. the inspiration for these lovely ladies came from a mannequin i have hanging on the door of our "beach bathroom" (i.e. the semi-private concrete-floored bathroom in our basement).

so the image went from this:

to this:

to this:

and these girls happen to look quite nice in my kitchen window!

 

 

 

and, while i have a lot more to say about my lovely quilt, the little guy is up, and telling me "mommy bubbles. mommy bubbles." so i guess it's bubble-blowing time. see ya later!

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

they say we won't be given more than we can handle...

...but sometimes I wonder. especially when we get a letter from our landlord requesting that we vacate in two months. ACK! they want to sell the house by the end of the summer, and they want us out to do it. jerks.

dumb stupid jerks.

and mean!

mean, dumb, stupid jerks.

we weren't looking to stay in this place forever, but we definitely weren't looking to move out anytime soon, what with the 15+ boxes/month of medical supplies we receive a month, the home health nursing, the big heavy medical equipment, and so on and so forth. but we definitely won't miss the leaking ceilings, outdated kitchen, marshy backyard, flooding basement, leaning back deck, and GINORMOUS heating and cooling bills. while this place certainly isn't a dump, it's FAR from being a gem. so good luck to my landlords with unloading it in the next few months. makes me wonder if they're familiar with the terms FULL DISCLOSURE, but, hey, that's not my problem.

in other news, Rowan is coming off the vent for 7 hours a day now, increasing to 8 hours a day on Friday. we've been having a lot of fun taking him out to different places. so far he's been to the midtown scholar bookstore a few times, walking around and picnicking by the river, a sushi place, with me to get by TB skin test, back to the NICU for a visit with some of his nurses, a pizza shop, a clothing store, his gramma's house (of course), and a few other random places. and tonight he gets to go looking at a couple of houses with us! oh, the places you can go :)

tah tah for now, and wish us luck!

erin