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.
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:
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):
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 :)
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!
i am feeling very thankful for so many things right now. one being this:
the little graham-cracker-crust bits are just to DIE for! i am also grateful for my amazing ability to stop eating it before the whole pint is gone.
i am thankful to have a job to go back to tomorrow, even though i'm not altogether happy to be going back to it...
What would Nurse Ratched do?
(i am also a nurse, for all of you folks out there in internet-land who don't know that yet).
i am thankful to have had a 6 week maternity leave after already having been out of work for so long on bedrest and post c-section/NICU days.
i am thankful that we have a good night-nurse this evening, so i can sleep easy.
i am thankful rowan got to go for a walk today, and have his bath out on the back porch amid the fireflies.
and most of all, i am thankful this sweet baby is home with his family where he belongs, laying in his crib and making squeaky-noises while he sleeps. good night, little guy. i'll see you in the morning!
keeping weird hours definitely messes with my productivity. billy and my sleep schedules are all over the place this weekend being that there seems to be a home nursing shortage at the moment. right now i'm not quite tired enough to sleep, but too tired to do anything, so i'll just veg out on the glider-rocker and write a blog.
rowan is fast asleep on his boppy on the floor next to me. he is the picture of peacefulness. heck, he's not even breathing. he's letting the vent do that for him. must be nice to have that option! as long as he remembers to breathe when the time comes to be off the vent then that's okay with me. relax now while you can, little man...
billy and i spent the better part of the afternoon trying to make rowan laugh. he was actually doing well with his speaking valve (which lately he hasn't been doing so hot with), so we got to enjoy hearing him make some noise. we didn't hear a laugh exactly, but we think he tried. it sounded a little like a loud exhale while he was smiling really big. his other favorite thing to do is lay in his jungle gym and swat at stuff. the jungle gym has three animals hanging from the top that he can look at: a monkey, an elephant, and a lion. he always wants to swat the lion. even when we move the animals around and put the lion in a different place, he always seems to find it and SWAT! bye-bye lion. then he puts his hands together and stares it down as if he's coming up with an evil scheme. one of his nurses thinks that he's hired the monkey and the elephant to take care of the lion for him, but i'm pretty sure he wants to do the job himself:
"i'll get you yet!"
doesn't he look like he's totally determined to do some damage there? trust me, this is one baby you DON'T wanna mess with, mr. lion.
well that's about all i have to report for now. guess i'll find some other non-productive activity to work on!
