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!

the one you feed

obviously, free time is not something I have a lot of, as evidenced by the fact that I am typing this post on my iPhone while rowan sleeps on me (some days the only way he will take a nap is if he's lying on top of someone). but I really am trying. I watched a documentary about Anne Leibovitz last night, and she said something to the effect of just having talent is not enough. talent is like a baby, you have to feed it and nurture it so it will grow. this struck a chord with me, so last night while Rowan was asleep, I did some normal stuff - cleaning, teevee watching, but I also did this    ======= >











I was inspired by an awesome book that billy bought me for christmas:

and I also signed up for a crafty online class here:

http://dispatchfromla.typepad.com/dispatch_from_la/rotdoci.html

which I am thoroughly looking forward to exploring this evening when the baby's asleep (in his crib this time.) but don't get me wrong, there's nothing like the cuddles I get from this sweet little peanut. He will always be my top priority, but occasionally I hope to get a chance to "feed" my other babies too ;)

~~~~~

a wise old man was teaching his grandson about the two wolves at war within us all. one wolf is good, fair, brave, honest, and full of hope. the other is selfish, greedy, angry, and full of fear.

"but grampa, which wolf wins?" asked the boy.

"the one you feed," the man replies.

native american folk tale

learning to laugh and other adventures

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!

pulling another all-nighter

well we've been home for three weeks, and have had three nursing call-offs already. hope this isn't going to be a pattern. for as much as i bitch about having nurses here all the time, we really do need them. anyway, it's another night with no coverage, and i sent billy to bed early because he works in the morning. ro is asleep, he's been sleeping through the night for a while now (hope i don't regret saying that later!) i'm not too sure what i'm going to do to keep myself awake all night...the day nurse comes on at six, so i guess i better brew some coffee!

freedom has a price

billy and i are about to embark on a night without nurses. it's a blessing and a curse. pro: there are no folks coming to meddle around in my private life tonight. con: i am going to be pretty tired tomorrow. we sleep in shifts, and it's my turn to go first. night-night!