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 :)

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

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.

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

have a large day

instead of saying conventional things like "have a nice day," or "have a good day," my grandfather (pop-pop) would always say "have a large day." yeah, i come from good stock. and i am writing this blog because i have just had myself a rather large day. here are the details:

of course there was the usual, taking care of the baby (which involves trach-care, g-tube care, getting dressed, love, chest PT, equipment checks, emails to nursing agencies, formula mixing, love, emails to medical equipment supply companies, love, love, love, cold washcloths for his tooth that's coming through, love, walks through the neighborhood, bouncing, flying, love, bottle-feeding, tube-feeding, spoon-feeding, love, love, reading books, talking, joking, love, jumping, bath, more trach care, more g-tube care, changing trach-ties, love, changing into pee-jays,  more chest PT, love, medications all day long, talking to the home-health nurse, love, and i'm sure there's more that i'm leaving out but that's a pretty good depiction.

and then there was that dinner i cooked: chicken burritos. yum. i'm about to go make myself another one just because i brought up the subject. enough said.

board game. this was brought on inconspicuously by me and aaron laying on the couch, bored for maybe one minute. so i looked at him and said "wanna play a game?" so we ended up playing apples to apples. it is the kind of game where more is merrier, so we invited billy and rowan to play along. since it is a card game where you essentially pick a card, we just held the choices up in front of the baby and he got his chance to make a choice. he did that by either smiling at a card, trying to grab a card, or headbutting a card. he was a good little player and actually ended up WINNING the game! yay rowan! mommy couldn't be more proud :)

curling my hair. yeah you heard it first. i actually spent time on my looks. i am moving up in the world. rowan helped me put my hair in curlers and i must say it looks GOOD.

about ten tons of laundry.

kalhua. mi-mi (pop-pop's wife)'s recipe. passed down the generations to little old me. i made 24 pints this evening which are currently sitting in darkness for one month until they can be brought out and given away as christmas presents and consumed in people's living rooms as white russians. i have made kahlua for the past 5 or 7 years (not sure) save last year (due to the bedrest issue) according to mi-mi's recipe so that in itself is big for me.

pumped 6-7 times. also good.

watched the steeler's game. or at least payed a small amount of attention to the steeler's game while making kahlua in the kitchen.

listened to a "this american life" episode about penn state. i'm not penn state alumni or even a fan, but it made me shed a few tears.

i haven't really sat down and rested or reflected on my day until right now. i haven't had a chance. so i think that qualifies as a large day. maybe humongous, but i'm not trying to brag. we'll just call it large and leave it at that.

here's to hoping tomorrow's just as big :)