...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 but we definitely won't miss the leaking ceilings, outdated kitchen, marshy backyard, flooding basement, leaning back deck, and GINORMOUS heating and cooling bills.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
28 April 2012
14 April 2012
friday the thirteenth
three months ago, we visited pulmonology on Friday the 13th. yesterday, Friday the 13th, we visited pulmonology again. and when we checked out, we made our next appointment for three months from now on Friday--you guessed it--the 13th of July! unable to sleep around 4am this morning and watching a today show rerun on tv, I learned that there haven't been three Friday the 13ths in one year since sometime in the 1980s. thank you Kathy Lee Gifford and Hoda Kotbe for this intriguing fact. it is tres bizarro that all our home vent appointments fall on these days. but i'm going to consider it lucky, as we've come away with good news each time so far.
this time we got the go-ahead to continue weaning Rowan off the vent, which means we get to increase his time off by 30 minutes twice a day each week until he's off all day. by our calculations, he will be completely off during the day by mid-june, provided everything goes well. he will still go back on the vent for naps and overnight, which means i still have to take it everywhere with me. but i celebrated anyway by buying Rowan a non-medical stroller off craigslist from a nice couple in uptown Harrisburg. they were very kind to let me "test" their stroller...i.e. shove the vent and suction machine in the basket to make sure it would fit. with a little mcguyver-ing, i got it to work, and i still have complete access to the oh-so-important "silence" button! we are now cruising in style with a deluxe italian stroller :)
the other topic we discussed was rowan's weight. he's been looking a little marshmallow-man-esque these days, so we decided to make a few changes to his calorie-packed diet. so we are cutting out microlipids (white fatty oily stuff we've been putting down his g-tube), and beneprotein powder.
we are also changing his formula to a higher-calorie content "big-boy" formula (since he is now 1 year old adjusted), which means i can feed him less volume. i'm hoping this may actually make him experience a new sensation called "hunger." since he's been born, we've been working with the mindset that the more weight he gains, the easier it will be for him to get off the vent. under the guidance of his pulmonologist, we've been pretty much stuffing him to the gills with food, using his g-tube. so i'm not sure he's really ever been hungry. i'm hoping this new foreign sensation will cause him to do this strange thing people do...EAT! (while rowan is a champ at taking his bottles, we haven't been so successful in getting him to transition to solid foods.) ever since PREGNANCY i've been obsessed with fattening this kid up, so it will be a big change for the both of us. but i will definitely miss these chunks!
any medical or trach-savvy folks reading the blog, note the pilot-balloon-in-the-armpit look that rowan is rocking. does this happen to every trached kid? i can't seem to keep it out of there!
one downside to weaning is that rowan is drying out a bit. the vent has a heater/humidifier unit that keeps his secretions (or "boogers" as i usually refer to them) moist and easy for him to cough out. you and i (provided you do not have a trach) breathe through our noses and mouths, which naturally heats and humidifies our breaths. rowan bypasses his nose and mouth on inhalation and breathes unhumidified air through his trach. up until now he has been on the vent most of the time, which heats and humidifies the air he breaths. but now that he is weaning off the vent, we are also losing the humidity, causing his boogers to become dangerously dry and sticky things that are hard for him to clear, and on occasions plug up his trach, effectively blocking his airway, and causing major problems. we do have nifty little things called HMEs (stands for heat/moisture exchanger--i think?) which is basically a sponge we put on the end of the trach.
in theory, it traps the humidified air that rowan exhales, and then when he inhales, he can get the moisture back. it also filters the air, so dirt and dust and little bugs don't fly in...gross to think about, right? in reality, it doesn't moisturize the air as well as we would like, so lately i've just been changing rowan's trach a lot...like every two days or so (normally you only need to do that once a week)...to prevent mucous plugs (the medical term for the big nasty dry boogers that block his airway). they do make HMEs that are bigger and work better, and i will be ordering those promptly on monday once my handy-dandy medical supply company opens.
well that's about all the updates i have for today, so i'll leave you with a fitting song from one of my favorite funny-named bands:
this time we got the go-ahead to continue weaning Rowan off the vent, which means we get to increase his time off by 30 minutes twice a day each week until he's off all day. by our calculations, he will be completely off during the day by mid-june, provided everything goes well. he will still go back on the vent for naps and overnight, which means i still have to take it everywhere with me. but i celebrated anyway by buying Rowan a non-medical stroller off craigslist from a nice couple in uptown Harrisburg. they were very kind to let me "test" their stroller...i.e. shove the vent and suction machine in the basket to make sure it would fit. with a little mcguyver-ing, i got it to work, and i still have complete access to the oh-so-important "silence" button! we are now cruising in style with a deluxe italian stroller :)
 |
| bye-bye heavy medical stroller, hello 9lb peg-perego! |
 |
| there's even a little room on top of the suction machine for a pulse-ox machine or ambu-bag |
 |
| rowan approves |
the other topic we discussed was rowan's weight. he's been looking a little marshmallow-man-esque these days, so we decided to make a few changes to his calorie-packed diet. so we are cutting out microlipids (white fatty oily stuff we've been putting down his g-tube), and beneprotein powder.
 |
| see ya later, supplements! |
we are also changing his formula to a higher-calorie content "big-boy" formula (since he is now 1 year old adjusted), which means i can feed him less volume. i'm hoping this may actually make him experience a new sensation called "hunger." since he's been born, we've been working with the mindset that the more weight he gains, the easier it will be for him to get off the vent. under the guidance of his pulmonologist, we've been pretty much stuffing him to the gills with food, using his g-tube. so i'm not sure he's really ever been hungry. i'm hoping this new foreign sensation will cause him to do this strange thing people do...EAT! (while rowan is a champ at taking his bottles, we haven't been so successful in getting him to transition to solid foods.) ever since PREGNANCY i've been obsessed with fattening this kid up, so it will be a big change for the both of us. but i will definitely miss these chunks!
 |
| chunky chunky arms |
one downside to weaning is that rowan is drying out a bit. the vent has a heater/humidifier unit that keeps his secretions (or "boogers" as i usually refer to them) moist and easy for him to cough out. you and i (provided you do not have a trach) breathe through our noses and mouths, which naturally heats and humidifies our breaths. rowan bypasses his nose and mouth on inhalation and breathes unhumidified air through his trach. up until now he has been on the vent most of the time, which heats and humidifies the air he breaths. but now that he is weaning off the vent, we are also losing the humidity, causing his boogers to become dangerously dry and sticky things that are hard for him to clear, and on occasions plug up his trach, effectively blocking his airway, and causing major problems. we do have nifty little things called HMEs (stands for heat/moisture exchanger--i think?) which is basically a sponge we put on the end of the trach.
 |
| rowan's "nose" |
in theory, it traps the humidified air that rowan exhales, and then when he inhales, he can get the moisture back. it also filters the air, so dirt and dust and little bugs don't fly in...gross to think about, right? in reality, it doesn't moisturize the air as well as we would like, so lately i've just been changing rowan's trach a lot...like every two days or so (normally you only need to do that once a week)...to prevent mucous plugs (the medical term for the big nasty dry boogers that block his airway). they do make HMEs that are bigger and work better, and i will be ordering those promptly on monday once my handy-dandy medical supply company opens.
well that's about all the updates i have for today, so i'll leave you with a fitting song from one of my favorite funny-named bands:
friday the 13th by deer tick
10 March 2012
damned blog
for some reason, the umbrella stroller blog got deleted away. i kept messing with the video...that may have had something to do with it. but anyway, i wanted to put the video back up because it is just so great. so here is billy pushing rowan around the street in front of our house on the first day we took him outside without his vent (and tons of other medical equipment):
05 March 2012
if / then
if you're a trach baby, and your mom's a trauma nurse, AND you poop all the way up your back, then you might get your onesie cut right off of you...
hey, where's my shirt going?
can i get undressed this way every time?
i may be cute, but i'm laying in poo
don't worry, no babies were harmed in the making of this blog. as an ER nurse, I cut clothes off people for a living. it's a million times better than risking getting poo on the trach, trachties, or vent tubing! and the shirt was too small anyway :)
23 February 2012
22 February 2012
vent weaning is so much fun!
so we've been weaning rowan off the vent for the past month or so, but it never really felt too different, because all we were doing was messing with his settings (i.e. decreasing his mandatory breath rate by 2 breaths per minute every friday). but today was special, because today is the first time we got to TAKE ROWAN OFF THE VENT FOR A HALF HOUR! so from 2:15-2:50 (we were having so much fun we accidentally took an extra five minutes!) rowan and i walked all around the house...upstairs to the bedrooms, downstairs to the basement, out on the porch, and even in the bathrooms. he absolutely loved it! and he did a VERY good job...I'm so proud of him! and the best part is he gets to come off for a half an hour twice a day, so when his dad and brother get home, we can do it again!
what a guy!
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