Today was Shane's first day back at school in a few weeks.
The phone rang mid-morning and provided a nice little jolt of adrenaline when I read and re-read the name of Shane's preschool on caller ID. I can't for the life of me remember the name of the person who called—the only thing I cared about in that moment was hearing "Shane's okay...we just want to let you know..."—everything else just sounded like the muted-trumpet vocalizations of Charlie Brown's teacher.
And luckily, I heard those words. The school was calling to say that Shane informed them that he's pretty tired and would rather just sit and read a book. Kylee and I have tried on numerous occasions to inform our kids of that exact fact, but they didn't seem to care and just kept jumping on us.
I asked about his coloring (facially, not crayonally) and they said it's fine, he just looked tired.
Whew.
We'll keep him home a couple days this week and continue to let him slowly get back into the groove of being an (over)active four year old.
Here's a snippet of our night-time-routine-ending conversation tonight:
"Dad, I'm so glad I can hear now!"
"Me, too, Shane..."
"But I'm also glad I don't have those white things."
"What white things?"
"The things that held my arms down."
"Oh...me, too. You had to wear them so you wouldn't pull out your tube. You had a tube to help you breathe."
"I have a tube in my chest?" (he looks down his shirt)
"No, you had one, but now you don't. It made you feel all better!"
"What else made me feel better?"
"Hm...medicine, doctors, nurses. A lot of friends came to see you and say hi. The best of all, God made you feel better!"
A look of satisfaction and contentment came over his face as he nodded with pursed lips. I kissed him goodnight and he reminded me not to turn on the shower because it hurts his ears (too loud in his room). Okay, I guess I'll shower in the morning.
Nigh-night, Shaney.
Monday, February 2, 2009
Friday, January 30, 2009
Footloose and PICC Line Free
We've been home for a week.
As I sit here and think about that statement, I nearly follow it up with a tidy "but it feels like yesterday..." then don a two-piece pajama set, shut off the vintage nightstand lamp and say good night to June Cleaver; perhaps tomorrow waking up to a simpler existence.
But when I look over the pictures of the past two weeks (which is confusingly becoming more difficult as time goes by), I feel increasingly removed from a situation that seems less like reality and more like a fissure in the time-space continuum swallowed us whole and spit us back out...though not entirely in the same place.
I long for a freeze-frame victory jump with the family as the credits role to inspiring synthesized outro music. As it turns out, our victory jump looks a lot more like bewildered blank stares set on weary faces fronting core-deep hollow exhaustion.
And our outro music?.....Imagination Movers.
We're not out of the woods—but thankfully we're also not stuck up a tree anymore.
Enough with the tough stuff. Let's move on to the good stuff...
Shaney is doing great.
It'll be a while until he's hitting on all cylinders, but he's coming around. I can't believe what he comprehends about this surreal chapter in his life; I can't even put words to it. The only thing I can do is recount a snippet of our experience (one I haven't shared on this blog yet) right before Shane's Flight for Life trip to Children's:
Shane was crashing (as was our world around us). Movement wound down to classic slow-mo hyperawareness—I stayed in Shane's face, ensuring him that everything would be alright. The scene was nightmarish, emphasized by the fact that Shane was also hyperaware and fully experiencing every prod, poke, pull and punch assessed upon his tiny body. In a brief moment of facial freedom from the forced-air bag-assisted breathing, Shane spoke up in an almost cheery voice, "Hey Guys!...I'm feeling better!"
In a moment scary enough to nearly make me pass out, Shane wasn't crying; he was busy thinking of calm and collected ways to make the whole thing stop. Take that vitality and apply it toward the healing upswing he's on now and you'll get a taste for his unstoppable desire to be himself again.
Shaney is done with his antibiotics. His labs came back free of infection, he got his PICC line out tonight and most importantly—he took his first real bath in over two weeks (thank God).
He's playing, smiling, laughing and enjoying.
This evening, the boys had a romping good time simply running laps around the island in the kitchen. Then, of course, it came time to sit and read books for about 12 seconds. After that, more running and general chaos. Given that I've already typed way more than I meant to, I'll let these pictures convey their ~19,000 words. Thanks once again for your boundless love and support.
I'll write more soon.
As I sit here and think about that statement, I nearly follow it up with a tidy "but it feels like yesterday..." then don a two-piece pajama set, shut off the vintage nightstand lamp and say good night to June Cleaver; perhaps tomorrow waking up to a simpler existence.
But when I look over the pictures of the past two weeks (which is confusingly becoming more difficult as time goes by), I feel increasingly removed from a situation that seems less like reality and more like a fissure in the time-space continuum swallowed us whole and spit us back out...though not entirely in the same place.
I long for a freeze-frame victory jump with the family as the credits role to inspiring synthesized outro music. As it turns out, our victory jump looks a lot more like bewildered blank stares set on weary faces fronting core-deep hollow exhaustion.
And our outro music?.....Imagination Movers.
We're not out of the woods—but thankfully we're also not stuck up a tree anymore.
Enough with the tough stuff. Let's move on to the good stuff...
Shaney is doing great.
It'll be a while until he's hitting on all cylinders, but he's coming around. I can't believe what he comprehends about this surreal chapter in his life; I can't even put words to it. The only thing I can do is recount a snippet of our experience (one I haven't shared on this blog yet) right before Shane's Flight for Life trip to Children's:
Shane was crashing (as was our world around us). Movement wound down to classic slow-mo hyperawareness—I stayed in Shane's face, ensuring him that everything would be alright. The scene was nightmarish, emphasized by the fact that Shane was also hyperaware and fully experiencing every prod, poke, pull and punch assessed upon his tiny body. In a brief moment of facial freedom from the forced-air bag-assisted breathing, Shane spoke up in an almost cheery voice, "Hey Guys!...I'm feeling better!"
In a moment scary enough to nearly make me pass out, Shane wasn't crying; he was busy thinking of calm and collected ways to make the whole thing stop. Take that vitality and apply it toward the healing upswing he's on now and you'll get a taste for his unstoppable desire to be himself again.
Shaney is done with his antibiotics. His labs came back free of infection, he got his PICC line out tonight and most importantly—he took his first real bath in over two weeks (thank God).
He's playing, smiling, laughing and enjoying.
This evening, the boys had a romping good time simply running laps around the island in the kitchen. Then, of course, it came time to sit and read books for about 12 seconds. After that, more running and general chaos. Given that I've already typed way more than I meant to, I'll let these pictures convey their ~19,000 words. Thanks once again for your boundless love and support.
I'll write more soon.
Tuesday, January 27, 2009
Back at Urgent Care
I've been meaning to post an update since our grateful homecoming, but have found neither the time nor energy. I apologize, but Hospital Time and Real Life Time are two very different realities. I will post a real update along with new much more Shane-like pics soon.
However, I thought I'd post this quick update (with an alarming title, sorry) to let everyone know that we're currently sitting in the waiting room of Children's Hospital Urgent Care to have Shane checked out for what might be a staph infection.
We're being overly-cautious at this point; and if it's positive I think treatment would be pretty easy (a different antibiotic than Shane's on now)...but we're back in a hospital none the less.
EDIT: We're back home. The doctors weren't worried about the rash, but they said it was a good idea that we went in. Right now, there's no such thing as "too careful."
However, I thought I'd post this quick update (with an alarming title, sorry) to let everyone know that we're currently sitting in the waiting room of Children's Hospital Urgent Care to have Shane checked out for what might be a staph infection.
We're being overly-cautious at this point; and if it's positive I think treatment would be pretty easy (a different antibiotic than Shane's on now)...but we're back in a hospital none the less.
EDIT: We're back home. The doctors weren't worried about the rash, but they said it was a good idea that we went in. Right now, there's no such thing as "too careful."
Friday, January 23, 2009
We're Home
Like the blog title says, we're home.
Thanks to everyone who prayed.
Thanks to God.
That's about all I have the capacity to type right now...
Thanks to everyone who prayed.
Thanks to God.
That's about all I have the capacity to type right now...
Happy Birthday, Shane!!!
Today is Shane's fourth birthday...and it's looking like it'll be his Welcome Home Day, too.
A couple days ago when we reminded him that his birthday was coming up, he informed us that he "doesn't like birthdays in the hospital." I don't know why we were even remotely thinking we could sneak one by him and just celebrate his birthday here at TCH, acting as if that's normal.
He knows it's not normal...but now he might think it's pretty freaking cool.
At around 11am this morning, 10 or so medical staff poured into his room with a birthday cake, a big hand-drawn sign, a teddy bear and best of all—a huge present! This was a surprise not only to Shane, but to Ky and me as well.
Unbelievable.
They sang Happy Birthday to Shane and all wished him a great last day at here at TCH. The oversized giftwrapped mystery turned out to be a large remote-controlled animatronic dinosaur that's almost as big Shane. Now, this doesn't seem like a big deal except for the fact that is it the EXACT (and expensive) toy he's had his eye on since last October (we didn't get it for him for Christmas or fear that his brothers, especially Casey, would fight over it and break it. Now, after seeing the excitement in Shane's eyes, we don't care...)
Again...unbelievable. There's obviously no way they could have known Shane's desire for that exact dinosaur; and it would have been much easier to just give him the fuzzy little white teddy bear and call it a day. I can only imagine that some very generous individual dontated toys—or money to buy toys—for such a time as this; when kiddos have to unfortunately celebrate their birthday in the hospital.
Whoever you are, Thank You.
His eyes LIT up and his day was made. Done and done. The great thing is, it only gets better from here. We get to go home.
Right now we're just waiting on a couple small procudures and a few logistical things, but we should be back home later this afternoon.
Amen.
A couple days ago when we reminded him that his birthday was coming up, he informed us that he "doesn't like birthdays in the hospital." I don't know why we were even remotely thinking we could sneak one by him and just celebrate his birthday here at TCH, acting as if that's normal.
He knows it's not normal...but now he might think it's pretty freaking cool.
At around 11am this morning, 10 or so medical staff poured into his room with a birthday cake, a big hand-drawn sign, a teddy bear and best of all—a huge present! This was a surprise not only to Shane, but to Ky and me as well.
Unbelievable.
They sang Happy Birthday to Shane and all wished him a great last day at here at TCH. The oversized giftwrapped mystery turned out to be a large remote-controlled animatronic dinosaur that's almost as big Shane. Now, this doesn't seem like a big deal except for the fact that is it the EXACT (and expensive) toy he's had his eye on since last October (we didn't get it for him for Christmas or fear that his brothers, especially Casey, would fight over it and break it. Now, after seeing the excitement in Shane's eyes, we don't care...)
Again...unbelievable. There's obviously no way they could have known Shane's desire for that exact dinosaur; and it would have been much easier to just give him the fuzzy little white teddy bear and call it a day. I can only imagine that some very generous individual dontated toys—or money to buy toys—for such a time as this; when kiddos have to unfortunately celebrate their birthday in the hospital.
Whoever you are, Thank You.
His eyes LIT up and his day was made. Done and done. The great thing is, it only gets better from here. We get to go home.
Right now we're just waiting on a couple small procudures and a few logistical things, but we should be back home later this afternoon.
Amen.
Thursday, January 22, 2009
A boy and his pizza
Even though Shane just nibbled his pizza—and almost fell asleep while doing so (as is evidenced in the propped-up-head iPhone pic above)—it sure was good to walk down to the cafeteria with him.
He smiled today more than yesterday; and he even let out a few boisterous belly laughs when squishing green playdough animals by summoning his alter ego, Shanezilla.
Today was okay...and, God willing, tomorrow will be better.
New Day
Today Shane finally started walking around (in his little brother's cramped Spiderman slippers, no less). He's wobbly, still detoxing from all the drugs and experiences his little body and mind have been subjected to over the past week (and I'm sure he'll never be able to detox from some of the memories that have been indelibly stamped into his subconscious).
He played in the creative area—with playdough (green, of course, which he gets to keep), a tool set, mini kitchen, toy vaccuum and he even got to roll billiard balls around on a pool table (I tried to give Shaney's pool shark career a kickstart by betting other dads in the room that Shane could defeat their kids in a friendly game of roll-the-ball-around pediatric pool...no takers).
Overall, his demeanor is much more Shane-like, but not quite. On the mend, though.
There's talk of us going home tomorrow, but it's contingent upon his reliance on extra oxygen (if he still needs it, we can't go home). We'll see.
Shane's about to go eat dinner (his second meal downstairs in the cafeteria today). Hooray!
Here's a pic of the sunset from his new room (click to see bigger version)...
He played in the creative area—with playdough (green, of course, which he gets to keep), a tool set, mini kitchen, toy vaccuum and he even got to roll billiard balls around on a pool table (I tried to give Shaney's pool shark career a kickstart by betting other dads in the room that Shane could defeat their kids in a friendly game of roll-the-ball-around pediatric pool...no takers).
Overall, his demeanor is much more Shane-like, but not quite. On the mend, though.
There's talk of us going home tomorrow, but it's contingent upon his reliance on extra oxygen (if he still needs it, we can't go home). We'll see.
Shane's about to go eat dinner (his second meal downstairs in the cafeteria today). Hooray!
Here's a pic of the sunset from his new room (click to see bigger version)...
Wednesday, January 21, 2009
New Room
Late this afternoon, we moved to the floor. For those of you not in-the-know, "the floor" happens to have such luxurious accouterments as bathrooms inside the room, actual darkening of the area when lights are turned off, near-silence (on an objective scale, noise levels probably rank slightly above a busy youth hostel in Amsterdam—but compared to the PICU, it's like sleeping in a sound booth); and most of all, we are afforded a smidge of general privacy.
This would all be great stuff if it weren't overshadowed by the fact that Shane had a pretty junky day. He's just not himself (VERY understandably so), but it's just so hard for us to see him so...off. Kylee put it best when we were walking down to the cafeteria (TCH calls it a "Fresh Market"...is it in a hospital? Check. Is food purchased and consumed there? Check. Then it's a cafeteria. Good food—but still a cafeteria); Ky said "I miss my kids," which might seem an odd statement given that we've been virtually sutured to one of 'em for a week straight.
But we haven't been with Shane. We haven't been with reckless abandon, untethered joy and stubborn wit. We've been with a kid who wasn't built for this. We've been with adrenelin, panic, nurses, doctors, syringes and sorrow. We have not been with Shaney.
I miss him, too.
And Ben.
And Casey.
And Kylee.
This would all be great stuff if it weren't overshadowed by the fact that Shane had a pretty junky day. He's just not himself (VERY understandably so), but it's just so hard for us to see him so...off. Kylee put it best when we were walking down to the cafeteria (TCH calls it a "Fresh Market"...is it in a hospital? Check. Is food purchased and consumed there? Check. Then it's a cafeteria. Good food—but still a cafeteria); Ky said "I miss my kids," which might seem an odd statement given that we've been virtually sutured to one of 'em for a week straight.
But we haven't been with Shane. We haven't been with reckless abandon, untethered joy and stubborn wit. We've been with a kid who wasn't built for this. We've been with adrenelin, panic, nurses, doctors, syringes and sorrow. We have not been with Shaney.
I miss him, too.
And Ben.
And Casey.
And Kylee.
TCH is beautiful
Not only is The Children's Hospital the best place for kids because of the doctors, nurses and general staff—but the facilities are unbelievable and it speaks volumes about the importance this organization places on healing experiences for children and their families.
We are blessed to be here.
I want to get outside today to snap some outdoor pictures (it's supposed to be 65 degrees!), but here's a picture I took of the lobby area eight steps outside the PICU at sunset. (Click on the image for a larger version, and wait for it to load as it is almost 1MB)
We are blessed to be here.
I want to get outside today to snap some outdoor pictures (it's supposed to be 65 degrees!), but here's a picture I took of the lobby area eight steps outside the PICU at sunset. (Click on the image for a larger version, and wait for it to load as it is almost 1MB)
Tuesday, January 20, 2009
Finally, we can bribe him with candy
Well, we're still in the same ol' PICU room; there was no room for Shaney on "the floor".
No biggie.
Shaney did, however, get a new Peripherally Inserted Central Catheter ("PICC line" for short). It's like an IV, but way more like an alien tentacle that pierces your skin, slithers into one of your arm's veins and laces itself all the way through to the top of your heart...the superior vena cava, to be exact. In other words, it's an IV on 'roids.
PICC lines are much more durable and effective than regular IV lines (what with the business of dumping meds straight into the heart n' whatnot). That's good because it looks like Shane will continue his antibiotics through the PICC line when we get home (Thursday? Maybe Friday?)
Shaney's PICC experience: there are two meds that the PICC nurse gives kiddos before inserting the alien tentacle; versed (pronounced "verr said") and ketamine (pronounced "kett uh mean"). Versed has a nice general chillaxing effect while ketamine is a disassociative narcotic used to confuse the brain as to what the heck is going on (it was explained to us that it essentially disconnects the brain from the body, not allowing the kid to pinpoint where the nurses are working on their body).
We left our room and went to the waiting area at 4pm so they could work on Shane. The PICC nurse (yes, this is all she does all day long and she's very good at it) said we'd be back in the room by 4:30 or so. 4:50 rolled around and we asked the front desk gatekeeper to call our room to see if Shane was done getting PICC'd. He wasn't...
Ky started to panic, as did I, but I wasn't very worried. Ky semi-frantically blurted a single uniword, "Whatdoyouthink'sgoingon?!" "Not sure," then I posited, "if I had to guess, Shane was more of a firecracker than they bargained for, they had to calm him down and give him more drugs...and that's what we're waiting on."
Sure enough when we got back into the room, the previously-cool-as-a-cucumber PICC nurse was frazzled and bemused, as though she just saw a shrieking child ghost (because she basically just did). Apparently, Shane had a "bad trip" on the ketamine (which, oh by the way, is also in the same narcotic class as PCP/Angel Dust...tap, tap, tap...is this thing on? I just said Angel Dust! Holy cat fur chinchilla coat on a unicycling chimp...ANGEL DUST!!!) They were also supposed to take out the central line IV from Shane's groin, but it was all they could do to keep him in the room. Shane was given a quick double dose of versed to further his chillaxedness and reduce the bad-acid-at-Woodstock effect.
The double kicker is the fact that this very talented and very experienced PICC nurse has never seen anything remotely like that in a toddler before. You see, ketamine isn't given to anyone ages 10 and up due to the violently wicked trips it can induce in that age group...but this nurse had never in her career witnessed the same reaction in a three (almost four) year old. Further proof that Shane is an old soul, wise beyond his years...but then we didn't need ketamine to tell us that.
After the surgery Shane was a loopy, balloon-swatting smile basket. So what does a concerned father do in a time like this? Busts out the iPhone and records his kid sending a quick message to all his well-wishers, of course! And here it is:
Click on this to listen to Shane saying "Hey everybody...thanks for praying...I love you!"
Shane has had a tough time keeping his oxygen saturation consisntently above 90%, so now he's wearing a nasal cannula. How did we get him to do it? Like this blog entry's title says, we can finally bribe him with candy (I don't think that tactic would have gone nearly as well just prior to Shaney getting on the Flight for Life chopper: "Hey Shane, if you just calm down and let these nice-but-frenzied people stick a tube down your throat, you'll get three green Mike n' Ikes!") Then again, I suppose I did promise him the biggest bestest ice cream after this is all over...maybe that's why he's doing so well!
In all seriousness, he's doing so well because God has placed His healing hand on Shane's body; and He's also mobilized everyone around us—and seemingly around the world, I'll explain later—to surround us in the warmest most peaceful embrace a family could ask for.
Thanks again...and no, I'm not giving any of you versed or ketamine, stop asking.
No biggie.
Shaney did, however, get a new Peripherally Inserted Central Catheter ("PICC line" for short). It's like an IV, but way more like an alien tentacle that pierces your skin, slithers into one of your arm's veins and laces itself all the way through to the top of your heart...the superior vena cava, to be exact. In other words, it's an IV on 'roids.
PICC lines are much more durable and effective than regular IV lines (what with the business of dumping meds straight into the heart n' whatnot). That's good because it looks like Shane will continue his antibiotics through the PICC line when we get home (Thursday? Maybe Friday?)
Shaney's PICC experience: there are two meds that the PICC nurse gives kiddos before inserting the alien tentacle; versed (pronounced "verr said") and ketamine (pronounced "kett uh mean"). Versed has a nice general chillaxing effect while ketamine is a disassociative narcotic used to confuse the brain as to what the heck is going on (it was explained to us that it essentially disconnects the brain from the body, not allowing the kid to pinpoint where the nurses are working on their body).
We left our room and went to the waiting area at 4pm so they could work on Shane. The PICC nurse (yes, this is all she does all day long and she's very good at it) said we'd be back in the room by 4:30 or so. 4:50 rolled around and we asked the front desk gatekeeper to call our room to see if Shane was done getting PICC'd. He wasn't...
Ky started to panic, as did I, but I wasn't very worried. Ky semi-frantically blurted a single uniword, "Whatdoyouthink'sgoingon?!" "Not sure," then I posited, "if I had to guess, Shane was more of a firecracker than they bargained for, they had to calm him down and give him more drugs...and that's what we're waiting on."
Sure enough when we got back into the room, the previously-cool-as-a-cucumber PICC nurse was frazzled and bemused, as though she just saw a shrieking child ghost (because she basically just did). Apparently, Shane had a "bad trip" on the ketamine (which, oh by the way, is also in the same narcotic class as PCP/Angel Dust...tap, tap, tap...is this thing on? I just said Angel Dust! Holy cat fur chinchilla coat on a unicycling chimp...ANGEL DUST!!!) They were also supposed to take out the central line IV from Shane's groin, but it was all they could do to keep him in the room. Shane was given a quick double dose of versed to further his chillaxedness and reduce the bad-acid-at-Woodstock effect.
The double kicker is the fact that this very talented and very experienced PICC nurse has never seen anything remotely like that in a toddler before. You see, ketamine isn't given to anyone ages 10 and up due to the violently wicked trips it can induce in that age group...but this nurse had never in her career witnessed the same reaction in a three (almost four) year old. Further proof that Shane is an old soul, wise beyond his years...but then we didn't need ketamine to tell us that.
After the surgery Shane was a loopy, balloon-swatting smile basket. So what does a concerned father do in a time like this? Busts out the iPhone and records his kid sending a quick message to all his well-wishers, of course! And here it is:
Click on this to listen to Shane saying "Hey everybody...thanks for praying...I love you!"
Shane has had a tough time keeping his oxygen saturation consisntently above 90%, so now he's wearing a nasal cannula. How did we get him to do it? Like this blog entry's title says, we can finally bribe him with candy (I don't think that tactic would have gone nearly as well just prior to Shaney getting on the Flight for Life chopper: "Hey Shane, if you just calm down and let these nice-but-frenzied people stick a tube down your throat, you'll get three green Mike n' Ikes!") Then again, I suppose I did promise him the biggest bestest ice cream after this is all over...maybe that's why he's doing so well!
In all seriousness, he's doing so well because God has placed His healing hand on Shane's body; and He's also mobilized everyone around us—and seemingly around the world, I'll explain later—to surround us in the warmest most peaceful embrace a family could ask for.
Thanks again...and no, I'm not giving any of you versed or ketamine, stop asking.
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