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.
The fog is lifting
This morning, one of the first questions Shane squeaked out was "Where are we? The hospital?"
Clearly, Shane is putting the pieces together. We just hope he doesn't assemble the whole puzzle. Knowing him, though, he will.
As Kylee was encouraging him to get more sleep this morning, he asked "Will sleeping make my tonsils grow back?" What three year old even understands the idea of something being surgically removed from their body, let alone the theoretical potential of that body part growing back during sleep?
I told you he's smart.
He also misted up when thinking about his brothers, emoting "I miss Benny. I miss Casey. I really really just want to go home." I know Shaney, me too.
The morning's highlight so far was his first solid breakfast since last Tuesday (as pictured above). He picked and stabbed at the small-portioned plate, but didn't really eat all that much. After a few bites, he said "My tummy hurts."
Shortly after that, the doctors came around to discuss our little dude. They all agreed Shane's doing very well (considering his circumstances) and should be moved to the floor (hospitalese for "a general non-ICU room"). Kylee and I are excited because "the floor" has private bathrooms and showers in each room, as opposed to the 150-yard roundtrip relief walk and bathing in a public shower on the floor above us. (Sounds like I'm complaining. I'm not. I'd walk 15,000,000 yards and not shower at all if it meant I got to stay with any of my kids in their hospital room.)
Shaney has since been ordered to ingest only clear liquids (which, thankfully for Shane—and every sick kiddo on the planet—includes popsicles). This is in preparation for a new, hardier IV to be put in his arm and the main arterial line taken out of his groin. This way, he can continue to receive his antibiotics via IV at home, if it comes to that.
We'll still be here at The Children's Hospital for another few days...and we'll just keep on posting updates. We've said it a lot—and we continue to mean it with raw and tearful intensity—Thank You for your prayers, encouragement and love. A selfish request: don't stop.
Monday, January 19, 2009
Favorite moments from today
It's amazing what happens when you remove a bunch of painfully invasive surgical tubing from a kid's body...they start acting like a kid again. Shane is steadily becoming more Shane-like. All glory and honor and praise to God for getting us this far—and we still have an unpaved path ahead of us.
Hopefully, as has been repeated in a multitude of emails and blog comments, the worst is over. I pray it is, and I ask that you continue to pray as well. Shane has a fairly high level of anxiety when anyone walks into the room who looks even remotely like a doctor or nurse (which is warranted given his experience over the past five days). So please pray for peace to overcome his perception.
Pray not only for Shane, but even more so for all the kiddos surrounding us whose parents have not been given the opportunity to celebrate healing...yet.
Shane is still groggy and a bit confused. It will take a couple days for the narcotics-induced haze to evaporate. He didn't get his 14 gallons of Sprite today—but he drank water, gobbled a couple green popsicles (so did I, and we said "CHEERS!" as we clanged them together), he ate soup and melted everyone's hearts with his small angelic hoarse voice.
Here are just a few of my favorite moments from today:
Hopefully, as has been repeated in a multitude of emails and blog comments, the worst is over. I pray it is, and I ask that you continue to pray as well. Shane has a fairly high level of anxiety when anyone walks into the room who looks even remotely like a doctor or nurse (which is warranted given his experience over the past five days). So please pray for peace to overcome his perception.
Pray not only for Shane, but even more so for all the kiddos surrounding us whose parents have not been given the opportunity to celebrate healing...yet.
Shane is still groggy and a bit confused. It will take a couple days for the narcotics-induced haze to evaporate. He didn't get his 14 gallons of Sprite today—but he drank water, gobbled a couple green popsicles (so did I, and we said "CHEERS!" as we clanged them together), he ate soup and melted everyone's hearts with his small angelic hoarse voice.
Here are just a few of my favorite moments from today:
Shaney just got his breathing tube out!!!
Like the blog title says: Shaney just got his breathing and feeding tubes out and he's doing great! He also got his catheter out earlier (which produced palpable relief; he immediately calmed down, his eyes filled with life and he started making his Spiderman balloon dance more than ever! I'd do the same...)
His first request?
Sprite.
We have to wait a few hours before he can eat or drink, but when he can he'll get 14 gallons of Sprite as far as I'm concerned. I think these pics say more than I could ever type:
His first request?
Sprite.
We have to wait a few hours before he can eat or drink, but when he can he'll get 14 gallons of Sprite as far as I'm concerned. I think these pics say more than I could ever type:
Adapt
Well, my boys make me cry. Shane's situation for the pure unfairness of the sensory and inflammatory attack on his little body; and Chris for his unmatched love. All of your comments and emails and texts are so encouraging and wonderful to read. It is amazing how surrounded we are by love and prayer.
I slept with my slippers on. Notable for two reasons: 1) I slept; and 2) who in the world sleeps with slippers? If you are one of the lucky ones, I commend you for practicing a sleeping technique that is clearly superior.
Anyway, I was shuffling (in my slippers) the long walk to the parent's bathroom when I had a moment of clarity and perspective. I laughed at myself for sleeping with my slippers and I thanked God that I slept last night. Compared to the first night we were here, I got 3x the amount of sleep. Moreover, I didn't wake every time the nurse suctioned Shane's tube (which is incredibly painful and confusing for him).
Those simple things helped me realize how quickly we all adapt. For the first time in his life, and NOT by choice, Shane has been still and quiet. Shane doesn't cry or wince as much when they shove a 15" straw down his breathing tube and pull mucous and breath from his lungs. Neither do I. Shane has learned quickly (what's new!?) how to make his needs known by nodding yes, shaking his head no, or yanking his balloon around. We've learned quickly how to respond to those simple needs. Shane doesn't have a look of pure panic when he hears the alarms that typically preclude a painful procedure. Our bodies and ears have grown accustomed to alarms, hums, and beeps that are ever-present in an ICU hospital room.
We've adapted to unusual circumstances. We've adapted to sleeping in uncomfortable beds, sometimes in our clothes. We've become used to the weirdness and vacuum of living in a hospital. Despite the overall suckiness (is that a word?) of the situation, we've seemingly "stepped up to the plate." We will never get used to the separation and inablity to hug or hold our sons, not hearing our children laugh or play; we will never adapt to the feeling of pure helplessness of seeing our sons in pain. And yet at the same time, I am newly reassured by this simple skill of adaptation that we humans have, that Chris and I have. It keeps me going and makes me realize that regardless of how painful, scary, unfair, sucky, fill-in-the-blank, we will adapt--Chris and I together--to whatever the future holds.
Sunday, January 18, 2009
Sunday Night Shaney Update and a couple pics
As Sunday draws to an end, I thought I'd jot a quick weekend wrap up—that is, if you can "jot" on a computer. (And as it turned out, it wasn't all that quick, but keep reading. -Chris)
Compared to a couple days ago, Shane is doing much better. The major issue, a strep infection of his neck tissue and blood, has been identified and addressed. It's not gone yet—blood cultures will hopefully confirm that soon—but it's on its way out. That's what I call good riddance.
Today's big step was getting the swelling down. Frankly, he does this by eliminating all the excess fluid through a catheter into a bag (on a related note, I made sure to snap a pic of his pee bag when it was really full. Being an almost four year old boy, he tends to get a kick out of anything having to do with pee and poop, especially a bag full of it...and especially if he made it). If you roll your mouse over the pic below, you'll see a before/after snapshot of the redness and swelling on Shane's neck (the lines are pen markings denoting the infection's reach):
I'll admit, these pictures don't do the situation justice. The "before" pic was actually taken prior to the swelling and redness getting really bad (at which point it looked like Shane had a shiny red balloon fused to his neck) and the "after" pic was taken earlier this morning before the swelling went down even more. So take each photo, mentally calculate for an exponential worse/better factor of 2.837 in the proper direction and you'll get a clearer picture of the positive pendulum swing this nifty rollover pic represents.
Shane's more awake and aware than he has been in the past few days. He still knows what he wants—this pic represents the fruition of his very specific requests for the Spiderman balloon, his stuffed penguin and his favorite hat (featuring Spiderman, of course):
If he needed something else, he tugged his Spiderman balloon to get our attention. But then, everything he does right now gets our attention...
He's slowly being weened off of all his meds and his food drip will be stopped at 2am in anticipation of potential extubation tomorrowation (sorry, got carried away with the "tions"). I'm not getting my hopes up yet, we'll see what they say during rounds in the morning.
Here's another pic of Ky, me and Shaney—my brother took it with my camera when we weren't looking:
Finally for today, I'd like to tell you about my amazing wife, Kylee. It goes without saying that she is the single bestest mom I know (present moms excluded, of course :::wink:::), but I'll say it anyway: she is the single best mom I know. She cares so much for our boys, it hurts. Ky has sacrificed more than I can imagine to give our little guys the care, compassion, education and tools they need to grow into the incredible young men they're becoming.
Not only that, but she somehow finds time to care about things outside our house as well (she's much better at this than I am). I laugh when she answers a survey phone call and then stays on the the line, actually answering their questions with honesty and conviction. "Things won't change if I don't let them know," she states matter-of-factly. And she's right. For this reason, and a million reasons just like it, the world is a better place because of her.
Kylee made this at the hospital in the downtime we've had while tending to Shaney:
Tell me that's not the cutest little hat you've ever seen in your entire hat-seeing life. The kicker is that it matches a boat-neck sweater she also made...appropriately sized for some teeny tiny lucky kiddo. That's because almost every one of her knitting projects go to charity—and those that don't, go to friends and family as gifts (complete with sweet handspun custom cardboard tags).
She's also knitting a bunch of wool helmet liners for US troops overseas and 7" sqares that get sewn together into blankets for those in need of warmth, but can't provide it themselves.
I could go on for another few hundred pages, but I think you get the point.
Yes, the world is a better place because of Kylee...and our boys will be better men because of her, too.
I love you, Kylee, we're gonna get through this...
Compared to a couple days ago, Shane is doing much better. The major issue, a strep infection of his neck tissue and blood, has been identified and addressed. It's not gone yet—blood cultures will hopefully confirm that soon—but it's on its way out. That's what I call good riddance.
Today's big step was getting the swelling down. Frankly, he does this by eliminating all the excess fluid through a catheter into a bag (on a related note, I made sure to snap a pic of his pee bag when it was really full. Being an almost four year old boy, he tends to get a kick out of anything having to do with pee and poop, especially a bag full of it...and especially if he made it). If you roll your mouse over the pic below, you'll see a before/after snapshot of the redness and swelling on Shane's neck (the lines are pen markings denoting the infection's reach):
I'll admit, these pictures don't do the situation justice. The "before" pic was actually taken prior to the swelling and redness getting really bad (at which point it looked like Shane had a shiny red balloon fused to his neck) and the "after" pic was taken earlier this morning before the swelling went down even more. So take each photo, mentally calculate for an exponential worse/better factor of 2.837 in the proper direction and you'll get a clearer picture of the positive pendulum swing this nifty rollover pic represents.
Shane's more awake and aware than he has been in the past few days. He still knows what he wants—this pic represents the fruition of his very specific requests for the Spiderman balloon, his stuffed penguin and his favorite hat (featuring Spiderman, of course):
If he needed something else, he tugged his Spiderman balloon to get our attention. But then, everything he does right now gets our attention...
He's slowly being weened off of all his meds and his food drip will be stopped at 2am in anticipation of potential extubation tomorrowation (sorry, got carried away with the "tions"). I'm not getting my hopes up yet, we'll see what they say during rounds in the morning.
Here's another pic of Ky, me and Shaney—my brother took it with my camera when we weren't looking:
Finally for today, I'd like to tell you about my amazing wife, Kylee. It goes without saying that she is the single bestest mom I know (present moms excluded, of course :::wink:::), but I'll say it anyway: she is the single best mom I know. She cares so much for our boys, it hurts. Ky has sacrificed more than I can imagine to give our little guys the care, compassion, education and tools they need to grow into the incredible young men they're becoming.
Not only that, but she somehow finds time to care about things outside our house as well (she's much better at this than I am). I laugh when she answers a survey phone call and then stays on the the line, actually answering their questions with honesty and conviction. "Things won't change if I don't let them know," she states matter-of-factly. And she's right. For this reason, and a million reasons just like it, the world is a better place because of her.
Kylee made this at the hospital in the downtime we've had while tending to Shaney:
Tell me that's not the cutest little hat you've ever seen in your entire hat-seeing life. The kicker is that it matches a boat-neck sweater she also made...appropriately sized for some teeny tiny lucky kiddo. That's because almost every one of her knitting projects go to charity—and those that don't, go to friends and family as gifts (complete with sweet handspun custom cardboard tags).
She's also knitting a bunch of wool helmet liners for US troops overseas and 7" sqares that get sewn together into blankets for those in need of warmth, but can't provide it themselves.
I could go on for another few hundred pages, but I think you get the point.
Yes, the world is a better place because of Kylee...and our boys will be better men because of her, too.
I love you, Kylee, we're gonna get through this...
Shane being Shane, Part Two
With all the hospitalized Shaney pics and descriptions, I thought I'd level the playing field a bit by offering up a few more prime examples of Shane being Shane.
Here he is with his brothers, Casey and Ben. Two Home Alones and a Robot...
I bet Shane wishes he were doing this right now...soon, Buddy, soon...
Shaney Brainy decided to show off those brains by writing his name on a magnadoodle...and, oh yeah, he's wearing a snorkel mask and ski bib over his jammies...
And just in case you didn't believe me about Shane's smile lighting up a room, his laugh can detonate the sun...
Lastly, just Shane being (crazy) Shane—putting a death metal spin on one of his favorite nigh-night songs, "Tender Shepherd"...
Here he is with his brothers, Casey and Ben. Two Home Alones and a Robot...
I bet Shane wishes he were doing this right now...soon, Buddy, soon...
Shaney Brainy decided to show off those brains by writing his name on a magnadoodle...and, oh yeah, he's wearing a snorkel mask and ski bib over his jammies...
And just in case you didn't believe me about Shane's smile lighting up a room, his laugh can detonate the sun...
Lastly, just Shane being (crazy) Shane—putting a death metal spin on one of his favorite nigh-night songs, "Tender Shepherd"...
Holding Hands
When I'm holding Shaney's hand, I don't know if I'm feeling his heartbeat or mine through our clasped fingers.
Doctors' Rounds 01.18.09
The docs just left Shane's room after yet another installment of "Doctors' Rounds: Real Life in the PICU!" This one was much more laid back than the initial onslaught of TV show-style quick-cut Aaron Sorkin-scripted grilling of junior medical staff.
Things are still moving forward and the mantra continues to be "it'll just take time." Like I mentioned earlier this morning, Shane's swelling is way down and his alertness is way up (sometimes too up, as in get-these-freaking-tubes-outta-me up). The primary concern is still his airway and making sure he develops that sought-after leak they've been waiting for (the space in his throat around his breathing tube). Right now, his airway is still constricted–that, and only that, is the reason for the breathing tube. His lungs are great and he can pretty much breath on his own without any help (save for a bit of extra O2...but heck, who couldn't use that up here at altitude?)
The only other item on the table is controlling the infection, but all indications point toward that battle being won. They're doing to run more blood cultures just to confirm that, though.
Below I've linked to audio from this morning's rounds. I recorded it on my beloved iPhone and the audio quality isn't great (you'll have to forgive me for not packing up a few mics, preamps and Pro Tools when Shane was being Life Flighted to Children's Hospital). :) If you're geeky like us and want to hear exactly what the doctors are saying about Shaney, check it out:
Audio from this morning's Doctors' Rounds
As a bonus, here are the docs talking (while I was recording with my iPhone, Ky snapped pics with hers...go iPhone!!!)—the young looking guy in the first pic is the Man in Charge. (I'll spare the Doogie Howser jokes, he knows what he's doing...not that Doogie didn't, but he's imaginary).
Things are still moving forward and the mantra continues to be "it'll just take time." Like I mentioned earlier this morning, Shane's swelling is way down and his alertness is way up (sometimes too up, as in get-these-freaking-tubes-outta-me up). The primary concern is still his airway and making sure he develops that sought-after leak they've been waiting for (the space in his throat around his breathing tube). Right now, his airway is still constricted–that, and only that, is the reason for the breathing tube. His lungs are great and he can pretty much breath on his own without any help (save for a bit of extra O2...but heck, who couldn't use that up here at altitude?)
The only other item on the table is controlling the infection, but all indications point toward that battle being won. They're doing to run more blood cultures just to confirm that, though.
Below I've linked to audio from this morning's rounds. I recorded it on my beloved iPhone and the audio quality isn't great (you'll have to forgive me for not packing up a few mics, preamps and Pro Tools when Shane was being Life Flighted to Children's Hospital). :) If you're geeky like us and want to hear exactly what the doctors are saying about Shaney, check it out:
Audio from this morning's Doctors' Rounds
As a bonus, here are the docs talking (while I was recording with my iPhone, Ky snapped pics with hers...go iPhone!!!)—the young looking guy in the first pic is the Man in Charge. (I'll spare the Doogie Howser jokes, he knows what he's doing...not that Doogie didn't, but he's imaginary).
And then you remember where you are
Last night as I was finally settling in for "sleep," things started to buzz and whir outside our room and through the wall next door. Heavy footsteps shot out, growing louder and quicker with each passing second. Adrenaline-laced voices barked commands in Medicalese as machines rang out with alarms screaming for attention. Doctors and nurses, covered in light blue from head to sole, piled into and poured out of the room next to us.
Then the baby screamed out with all its life.
Though I had not forgotten, I was forced to remember where we are.
I'm not sure what happened to the kiddo next to us, but things eventually calmed down and I know without a doubt that he or she is in the best possible place for their situation. Just like Shaney.
Shane's general swelling (facial, hands, feet) has gone down significantly. This is great as it signals that his body is saying "hey, things are getting better, I don't really need all this extra fluid I'm holding on to." He can open his eyes wider (he's watching Imagination Movers right now), but he's still not okay with the fact that he can't run, ninja kick, dance, sing, yell, and go crazy in general.
It's really easy to let the Miracle of Modern Medicine slip into the complacent pocket of life's mundanity—even with my son on what amounts to life support—so I'm trying to keep a child's wide-eyed perspective with everything happening, not taking anything for granted. That said, it's still difficult not to wonder why the inventors of the feeding tube machine made it sound exactly like a kid coughing his lungs' cruddy contents into a breathing tube. I shot up out of bed every three minutes last night when that machine kicked into gear. Given everything else going on around us, however, I'm pretty sure we can deal with the gurggling decoy.
We're going to go grab breakfast and then we'll hopefully be back in time to listen to the doctors' rounds. More later.
Then the baby screamed out with all its life.
Though I had not forgotten, I was forced to remember where we are.
I'm not sure what happened to the kiddo next to us, but things eventually calmed down and I know without a doubt that he or she is in the best possible place for their situation. Just like Shaney.
Shane's general swelling (facial, hands, feet) has gone down significantly. This is great as it signals that his body is saying "hey, things are getting better, I don't really need all this extra fluid I'm holding on to." He can open his eyes wider (he's watching Imagination Movers right now), but he's still not okay with the fact that he can't run, ninja kick, dance, sing, yell, and go crazy in general.
It's really easy to let the Miracle of Modern Medicine slip into the complacent pocket of life's mundanity—even with my son on what amounts to life support—so I'm trying to keep a child's wide-eyed perspective with everything happening, not taking anything for granted. That said, it's still difficult not to wonder why the inventors of the feeding tube machine made it sound exactly like a kid coughing his lungs' cruddy contents into a breathing tube. I shot up out of bed every three minutes last night when that machine kicked into gear. Given everything else going on around us, however, I'm pretty sure we can deal with the gurggling decoy.
We're going to go grab breakfast and then we'll hopefully be back in time to listen to the doctors' rounds. More later.
Saturday, January 17, 2009
Email issues
Clearly, my posts are not as eloquent or artsy as my husbands. Thank GOD that he can put this all together because I know it is only helping Shane remain lifted in prayer.
A short note before I'm off to sleep: I am receiving all of your wonderfully encouraging emails and comments on this blog. But, for some unknown reason, my typical email system is not working properly to where I can SEND emails. I try to write everyone back, but it fails to send. So. Please just know that I'm reading everything and am in the loop, but am failing to finish the loop completely. If you do get an email from me, it will be from kyleecoleman@me.com. Feel free to write me on that address, too.
Goodnight....
The boy knows what he wants
We're in the new room (next door to the old room, it turns out). Shane has been pretty lucid the past couple hours—and especially the past 20 minutes.
Most of the time he's just frustrated that he can't run his mouth a million miles a minute, but that doesn't prevent him from trying. Watching his little pink lips navigate around the tubes in an effort to voicelessly make his requests known is both heartbreaking and endearing. The best, however, is when we actually succeed in understanding him—but sometimes it's not his fault when we don't understand, it's ours.
To wit:
Shane made clear that he wanted to hold his balloon strings, so we gave them to him...but that wasn't good enough. He mouthed a two-syllable phrase that we immediately deciphered as "five balloons." Shane just so happens to have five balloons attached to his bed—so we complied and gave him all the balloons which pleased him greatly. We then shot a hot blast of breath onto our fingernails, rubbed them on our shirts and gave them one last look with a satisfied and smarmy "we rock" smirk on our faces.
A minute or so later Shaney lifted his IV-laiden and strap-restrained left hand to extend his pointer finger to indicate his next request. Eagerly we went through every stuffed animal, every book, every crayon-colored drawing in sight, each met with a stern "no" head-shaking and additional tears from Shane's puffy eyes. Finally, in one last attempt to get his stupid parents to open their eyes, Shane raised his hand as high as he could and mouthed "vee..."
We looked at eachother in confusion and then slowly looked up at the large TV that must have been torturing Shane with a blank screen all day. We said "OH! TV?!" and he nodded as confidently as he could. We turned on Bee Movie just as he launched into a coughing fit requiring tube suction and received another does of chloral hydrate.
Goodnight, Shaney.
We love you more than you'll ever know.
Most of the time he's just frustrated that he can't run his mouth a million miles a minute, but that doesn't prevent him from trying. Watching his little pink lips navigate around the tubes in an effort to voicelessly make his requests known is both heartbreaking and endearing. The best, however, is when we actually succeed in understanding him—but sometimes it's not his fault when we don't understand, it's ours.
To wit:
Shane made clear that he wanted to hold his balloon strings, so we gave them to him...but that wasn't good enough. He mouthed a two-syllable phrase that we immediately deciphered as "five balloons." Shane just so happens to have five balloons attached to his bed—so we complied and gave him all the balloons which pleased him greatly. We then shot a hot blast of breath onto our fingernails, rubbed them on our shirts and gave them one last look with a satisfied and smarmy "we rock" smirk on our faces.
A minute or so later Shaney lifted his IV-laiden and strap-restrained left hand to extend his pointer finger to indicate his next request. Eagerly we went through every stuffed animal, every book, every crayon-colored drawing in sight, each met with a stern "no" head-shaking and additional tears from Shane's puffy eyes. Finally, in one last attempt to get his stupid parents to open their eyes, Shane raised his hand as high as he could and mouthed "vee..."
We looked at eachother in confusion and then slowly looked up at the large TV that must have been torturing Shane with a blank screen all day. We said "OH! TV?!" and he nodded as confidently as he could. We turned on Bee Movie just as he launched into a coughing fit requiring tube suction and received another does of chloral hydrate.
Goodnight, Shaney.
We love you more than you'll ever know.
New Tube, New Room, and request regarding visitors
Shortly after posting the last update, a feeding tube was ordered for Shane. This is a good call since the kid never stops eating (something that Kylee can attest to, as she has made mention of the fact that she feels like a short order cook 24 hours a day—a sentiment with which I'm sure roughly 100% of the other moms out there can commiserate) and he hasn't had solid food since Tuesday night. They decided to administer the tube nasally, it's the yellow-ish one in the pic below. The tape that's holding the breathing tube in place was re-administered since he woke up once and gave the tube a nice little tug. The tape in the pic below is the old tape, that's why it's covering his mouth.
Shane is holding up okay. Like I said earlier, he's working really hard to get the junk out of his lungs. Every time he just breaks down crying silently, sometimes to the extent that his little body shudders from the exhaustion.
He's been given the first chloral hydrate and he's sleeping (turns out they just added the chloral rather than replacing the versed with it—to calm him down overall). Prior to that, he was nearly wide awake and trying so hard to talk to us. The best we can tell, he was asking for water and telling us his mouth/throat hurts. Needless to say, it was very frustrating for all of us as we'd love nothing more than to hear his little munchkin voice say things like "I have drums in my mouth!" (after he discovered he can beat-box) or "Dad, I'm making two of you" (when he figured out how to cross his eyes).
I joked to Shaney that he's drinking formula and wearing size 4 diapers...his little brother Casey (a brute) wears size 6. He didn't laugh all that hard.
Last note for this afternoon's update: we LOVE all the visits, but please call first. We're pretty worn out and Shane has had a rough day (arguably, any day in the Pediatric Intensive Care Unit is a rough day). I don't want to scare anyone off, just saying we're tired and I think we're cashed out for the day. Tomorrow is a new day and will bring new adventures for all of us.
Please keep praying. Shane's little body is fighting hard, he's bouncing back...he just needs time. Below is a pic of his sweet little hand grasping the strings of a couple "get well" balloons (it wasn't staged, he insisted on holding them—shortly after this pic was taken, he was holding all three balloon strings). Love you all.
As an addendum to this update, here's an update to the update (didn't really warrant a new post in my estimation)...we're moving into a new room. It's really not news, but I thought I'd share.
Apparently Shaney's keeping his nurse super busy and the room next to us is also busy (each room/patient has their own nurse). However, they like pairing rooms and nurses together that aren't collectively 100% busy, so they can help each other out when a patient really needs it. So, that's that.
Shane is holding up okay. Like I said earlier, he's working really hard to get the junk out of his lungs. Every time he just breaks down crying silently, sometimes to the extent that his little body shudders from the exhaustion.
He's been given the first chloral hydrate and he's sleeping (turns out they just added the chloral rather than replacing the versed with it—to calm him down overall). Prior to that, he was nearly wide awake and trying so hard to talk to us. The best we can tell, he was asking for water and telling us his mouth/throat hurts. Needless to say, it was very frustrating for all of us as we'd love nothing more than to hear his little munchkin voice say things like "I have drums in my mouth!" (after he discovered he can beat-box) or "Dad, I'm making two of you" (when he figured out how to cross his eyes).
I joked to Shaney that he's drinking formula and wearing size 4 diapers...his little brother Casey (a brute) wears size 6. He didn't laugh all that hard.
Last note for this afternoon's update: we LOVE all the visits, but please call first. We're pretty worn out and Shane has had a rough day (arguably, any day in the Pediatric Intensive Care Unit is a rough day). I don't want to scare anyone off, just saying we're tired and I think we're cashed out for the day. Tomorrow is a new day and will bring new adventures for all of us.
Please keep praying. Shane's little body is fighting hard, he's bouncing back...he just needs time. Below is a pic of his sweet little hand grasping the strings of a couple "get well" balloons (it wasn't staged, he insisted on holding them—shortly after this pic was taken, he was holding all three balloon strings). Love you all.
As an addendum to this update, here's an update to the update (didn't really warrant a new post in my estimation)...we're moving into a new room. It's really not news, but I thought I'd share.
Apparently Shaney's keeping his nurse super busy and the room next to us is also busy (each room/patient has their own nurse). However, they like pairing rooms and nurses together that aren't collectively 100% busy, so they can help each other out when a patient really needs it. So, that's that.
"As good as he can possibly be doing"
We just finished listening in on Shane's doctors discussing him during their rounds. If you remember nothing else from this post, remember this: the doctors are saying that Shane is healing from his situation as fast as anyone can. We've still got a long road ahead, but that news is a breath of fresh air today.
With the infection identified and a more focus treatment applied, the mysterious puzzle of his condition has been almost completely put together. That said, priority #1 for him now is his airway. He still doesn't have satisfactory space around his breathing tube (called a "leak"—sounds bad, but it's good), which they need to see before they can remove the tube. Shane is pretty swollen all over (his body is holding onto excess fluid), which includes his internal tissues. Their concern is if they remove the tube, will his airway swell up more and restrict his breathing? To answer that, Kylee and I just continue the mantra "we're in no hurry."
For now, the goal is to continue to ween Shane off the support meds and equipment so he can smoothly transition to functioning on his own strength. Today the docs will try to get Shane breathing through the tube completely on his own, only giving him a little bit of pressure support from the ventilator at night. Additionally, they are going to switch from versed to choralhydrate to control his sedation (the choral doesn't weigh as heavy on his respiratory system and they want to move him away from possible versed dependence).
The need for a CT scan has almost completely evaporated, but he may need to receive formula through a tube to supply him with actual sustenance (right now, he's only on various IV fluids). The feeding tube, however, is contingent upon how long the breathing tube stays in—if it'll be in for a couple more days, he'll need the feeding tube—if not, he won't.
At this point "time is the best tincture" (as his nurse stated in a very old-timey way). More wait-and-see. Shaney's biggest struggle right now is the tough task of coughing all the junk out of his lungs. It's a rough process, but it needs to happen. He continues to play with his "get well" balloons, tugging at the string and watching them dance briefly before he falls back into an induced sleep.
Thanks to each and every one of you for the continued emails, texts, comments and visits. Please know that it means a TON to us and we are leaning hard on the support. Here are a couple pics of Shaney with Kylee and me...also one of him opening his eyes (he looks like he's uncomfortable, which he is, but he's mostly struggling to open his eyes).
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