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.
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 :)
...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 :)
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
21 November 2011
lots has happened in the three or so months since i've updated this site, but i definitely don't have time to share it all while i'm here at work and (once again) writing from behind a breastpump. yes...i am still pumping. my goal is to make it through the winter...to hopefully help rowan fight off any nasty cold/flu viruses he may encounter. i probably won't know what to do with myself after i stop i'll have so much time on my hands...(yeah right.) but anyway, the biggest news is that rowan's home vent nurse practitioner told me that she anticipates being able to start the vent weaning process when we go back to visit in january.
WOOT
WOOT!
supposedly weaning is a long process...we were told 6 months or so if all goes well, but it will be so very exciting to start. to even unhook him from that big heavy machine for fifteen minutes and just carry him around the house will be such a joy. right now i can't do that without getting a major backache, because it's baby in one arm, vent hanging off the other. if i had time for a chiropractor or some PT i could really use it, because my back is KILLING me!
in other news, rowan is sitting up almost all by himself, for a minute or so at a time. we still keep our arms around him, or at least have soft pillows around him, in case of a topple, but he is doing great. he is playing with all kinds of toys, pulling mom's hair, and taking off his own diapers. he has also been successful at removing his mickey button with the balloon still up. while this is not exactly a good thing, it is a sign of a healthy active baby, so i can't get too upset about it. he can also disconnect his vent circuits from time to time. he hasn't pulled out his trach yet, but we are keeping a close eye on him because i'm pretty sure he could if left to his own devices.
okay, that's all i can really update for now because break-time is over, and i gotta go save some lives.
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