rollercoaster

Ben, chillin' at the Ritz. (Thanks Cousin Hana for this pic!)

Ben and Mark return tonight after a week away in Philly. I apologize for not updating on Ben's progress sooner...it's like a big inhale. Somehow I get caught up in the holding of the breath, and once I exhale, well, it's just gone.

It's also a lot like a rollercoaster.

Waiting waiting waiting. This line moves so slowly. Ahhh. Finally we're at the front. Climb in the car and please don't forget to strap yourself in. This may be a wild ride. What's that you feel? Scared? Excited? Huge anticipation of what's to come? Oh yes.

Ben's surgery on Wednesday went easily. He checked in at 6:30 a.m. and was discharged less than 12 hours later. Amazing! I talked to him, or I should say I texted him, as usual, on his way over to the hospital and then all the way until he was wheeled into the OR. He was even more calm then last time, which was pretty darn calm. Didn't seem to have butterflies at all. I went back to sleep (it was still dark outside where I was) and was awoken by a call...from BEN...about three hours later. He was just waking up from anesthesia and he was in excellent spirits. He even made a joke about some pink unicorns flying by, teasing me that he was high on pain meds. He texted me not long after to say, "I feel fantastic." And he most surely must have. That boy was up and out of there so fast.

Zoooop! Up to that first hill. Looking good, looking good.

Not long after the surgery Dr. C came by to talk to Mark and shared that Ben's spine had been very stiff and he hadn't been able to get much correction at all. We had been looking at this surgery as a dividing line. Since Ben's curve had progressed so much over the past two years (from 25 to 54 degrees) we knew that if Dr. C could not straighten Ben's spine out to the low 40's we would not be able to continue with lengthenings of the rod, but would have to turn to fusion. If there was little correction in this surgery then we were apparently done with lengthenings. And fusion is HUGE.

Zoooop! Down, down, waaaay down to the bottom. Ugh.

So, why didn't I share this with you? Why didn't I write about it? Well, I was pretty exhausted on Wednesday. I'd been up at 2:45 am to text Ben and then didn't really catch up. I was emotionally exhausted just from the anticipation. I was blue about fusion looming, closer now than ever before. But, I knew we needed to wait for Dr. C to take the post-op x-ray and tell us what he saw there. [The other reason is that as soon as Ben's surgery was over I had to go into full on final details mode for the Dan Nichols concert that was happening less than 5 days later. (It was really a bummer that Mark and Ben had to miss it!) I was working on little sleep, was single parenting, and the only time I spent on the computer was going over details for the concert. Sorry!]

Since Ben got sprung from the recovery floor so fast, Mark didn't talk to Dr. C again before they left. Dr. C was busy doing spine surgeries all day.

You might understand my surprise then when I saw this email from Dr. C's nurse the next morning: "Dr. C said after the lengthening Ben measured 38 degrees so he would like to plan for another one in 6 months."

Wha-what? That's a 16 degree correction and even with leeway for measurement error that's still about 10 degrees correction. Significant.

Zoooop! Up to the top and flying around the twists and turns! Oh my stomach!

I literally wondered if Dr. C was looking at the right x-ray. I've been puzzling over that for days and will talk with him early this week. I don't want to argue or seem skeptical, but it's hard to figure all of it out.

Anyways, the other good news is that beyond being released so fast from the hospital, Ben's had little pain this week and needed very little in the way of pain meds. The usual is Hydrocodone and Valium to help with muscle spasms that occur after being moved around so much in the surgery. This time he was done using the meds about two days post-op. That's unheard of!

It also doesn't line up with a huge correction, so I'm not sure what to think.

At this point I'm just taking my gratitude and curling up with it on the couch. Thankful my boy is feeling great. Thankful this surgery is behind us. Thankful he was well cared for by his daddy and the Ritz-Carlton. Thankful they're coming home tonight.



And, folks, as we pull into the station please remember to grab all your belongs, and loved ones, and please come back and ride this rollercoaster AGAIN.


Oh yeah. We'll be back.

the usual



Frozen Snickers cake ala the most lovely chef at 10Arts at the Ritz

 It's that night again. The night before. The night before Ben's next surgery.

I am here, sitting in the darkening office, twilight upon me. He is there, in Philadelphia, a tummy full of Thai food, tuning out the future, watching TV with his dad.

I didn't hear from the hospital this time. Days ticked by and no call came from Dave in Anaesthesiology. So, one day last week I picked up the phone and called him myself. "Dave," I said, "Ben's coming in next week for his surgery and I was wondering if there was anything you needed to tell us?" "Oh no, Mrs. M," says Dave, "We know you and Ben and we know you know the drill. We figured you'd call us if there was a problem."

Sigh. We're regulars. Regulars in Anaesthesiology (and the OR, and the surgical floor, and the cafeteria, for that matter) at Shriners Hospital on N. Broad Street in Philadelphia. This is definitely not something to which one should aspire. It's not like when I was in my 20's and was so familiar to the guys in my favorite downtown Oakland Cambodian restaurant that they knew my voice on the phone. No, it's not quite that good.

Ben is so familiar with the drill that he knows, at age almost 14, which needles they use for his IV, which needles he prefers, in fact. That's too much. Too much information. Too much surgery.

Of course, a plus is that he's also a regular at the Ritz. That is good. Last night, after an easy cross-country flight, Ben sent me a text that read: "Hello ritz it's good to be back." And a little bit later a platter of delightful desserts arrived at his doorstep. Then this text came to me: "HOLY SHIT THEY JUST COMPED DESSERT AND IT LOOKS AMAZING IL SEND PICS BRB"  (*that's Be Right Back, for those of you who don't know the lingo).

Alas, there's a silver lining. Our story at the Ritz is beyond Good. Good Samaratin. Please don't think this is a silver spoon story. Oh no. This is a good-to-the-last-tear-get-out-your-hanky story.

But, tomorrow he will have his ninth surgery. Mine too, if you want to think of it that way. It's sort of a two steps forward, one step back kind of deal. They're replacing the rod that's hooked onto his spine and rib cage with a longer one. After this he'll probably be an inch taller or so with a straighter spine for a bit. And then, as he grows and he is in a big growth spurt right now, it will curve up again...and we'll schedule another surgery. Dave won't call us, but the Ritz will put on, well, the Ritz, don't you know.

Not sure how soon we'll be back there for "the usual," but we will be back.

touching a nerve

Of all things, I had to have an emergency crown set today at the dentist's office. The culprit, a cracked molar, started giving me trouble on Tuesday and luckily, I squeezed into Dr. McN's schedule before he left for a week off.

Not a great day to have a painful procedure. But I didn't have much choice.

It just so happened that at one point early in the procedure Dr. McN hit the crack with his drill and pain sizzled into my numb jaw. I jumped. I waved my hand (as instructed). "Oww, that hurts!" I said. I had actually been trying to be brave. It had been hurting a little as he neared the really sensitive place and I had tried to hold it together. But when he hit that crack it hurt so much. It was a zing not just to the nerve but to my whole confidence and composure. I suddenly was holding tears back and trying to breathe. I imagined myself at the end of the procedure going to sit in my car and having a really good cry.

About Ben, of course.

I talked to Mark after Ben came out of surgery and found out that Dr. C had gotten tremendous correction (we'll know more tomorrow). That is excellent news. Last time he got only a little and it seemed so much to do for so little a difference. Having a big adjustment is more bang for your buck, I guess. But, big adjustment also means big pain.

Think about this: They go in, move around his muscles, tendons, ligaments. They mess with the ribs, unscrewing the rod. They use pressure and gentle force to move his spine into a straighter position. They tighten the screws. They get out. And, of course, getting in requires an incision and getting out, stitches. That's a lot, for a "minor" surgery.

The after-effect of all this moving around is heavy duty muscle spasms. They come on if he's pushed or poked (think overzealous friends or brothers). They come from nowhere too. They're like Charlie horses in his back. Not easy to deal with. I'm getting myself prepared.

As for me, a second shot of Lydocaine and I was good for the rest of the dental appointment. I sat there in the mint green dental chair, listening to James Taylor, Carole King, and Crosby, Stills & Nash flowing in from the ceiling (ah well, some of my favorites are now dentist office music, sigh) and I breathed as deeply as possible. I didn't try to be too brave, just enough. It really didn't hurt any more after that one zinger. Not really.

When I got out to the car I didn't break down. I did call Mark and Ben as soon as I got into cell phone range (my dentist is in Occidental and there's ZERO coverage there). Ben felt horrible, and not just very, very bad, but really quite sincerely bad. So bad that he suddenly had to get off the phone and Mark said, "We'll call you back!!" and hung up so fast I felt that zing again. Right to the bone.

I took a deep breath. I went to pick up Toby at Shawna's house. Mark called back and told me things had improved. Shawna gave me gluten-free gingerbread she'd baked. I washed the horrible taste of dental cement out of my mouth.

Now, hours later my jaw is hurting. And now, I'm feeling how hard it is, and how hard it was last time, to be 3000 miles away from my boy when he's hurting.

text me you love me

About a month ago we broke the news to Ben that we had a surgery date for his next lengthening. We softened the blow by telling him in the very next breath that we were (finally) getting him a phone. He'd been begging us for one for months because 1) Harry got one and 2) he needed one to text his friends. (Yes, phones are for texting even more than talking with the teen crowd, don't you know.) As with almost all the technology that I have been resistant to (and to which I have finally caved due to pressure from my children), I have found that texting is an amazing form of communication and has opened up doorways between us.

There is a beauty in the brevity of text messages. Had we not been texting, I'm sure we would have chatted a few times on Mark's phone. But all my boys (Mark included) are reticent to chat on the phone, so that call would have felt more awkward. Via text Ben was open to joking, being sweet, being vulnerable, and being present up until the very last moment when (I imagine) he hit send and handed Mark his phone and was promptly wheeled away. And, I have a record of it on my phone to look at and remember.

I've (laboriously) typed it all up for you here and I've left it pretty much as is (spelling mistakes and shorthand left intact). The incredible sweetness of my boy is palpable. It's like poetry. Well, maybe just for me. (I should tell you, especially if you're not familiar with texting, that sometimes the messages seem out of order since I might be texting him a response while he's texting another comment. You might have to jump back and forth a bit to get the drift.)

You can see that Ben was in fantastically light spirits (confirmed by a phone call from Mark right after he was taken into the OR). This surgery is only the second in his memory that is "minor," although, remember they are going all the way to his ribs to do the adjustment. Minor is relative, yes? Anyhow, it is a short surgery comparatively (2 hours) and that is a huge difference for him. Having the knowledge that he got through the last one fairly easily and was out of the hospital in 13 hours, I believe made all the difference.

So here you have it, for posterity...my text conversation with Ben in the early hours of today.

* * * * * * * * * * * * * * * *

[3:25 am]

ME:  Just want u to know I woke up and am thinking abt u

BEN:  Hi mommy

ME:  Hi hon...how ya doin?

BEN:  Good i slept very nicely

ME:  Excellent you're such a trouper

BEN:  :)

ME:  R u in the taxi?

BEN:  Yes

ME:  Ok that's what i thought. What's the weather like?

BEN:  Blue skys with a couple of clouds

ME:  Sounds nice. It rained here most of the day yesterday. Dark now of course. It's 3:37 am!

BEN:  Haha

ME:  It was weird...I just woke up a few minutes ago...no alarm or anything, like my body just knew u were awake and on your way so I should wake up

BEN:  I woke up 2 minutes before my alarm went off

ME:  Yeah. Sometimes there's like a sixth sense

BEN:  Its like my body just new that i should be up u know?

ME:  Yep same with mine

BEN:  It was weird

ME:  I know I couldn't see a clock so I had to turn on my phone and I went "hey perfect timing! Ben's gonna be up now too"

BEN:  Wow thats cool

ME:  I used to wake up in the middle of the night every night, but I haven't for a while now. That's what made this really diff for me.

BEN:  O

ME:  I just want to send u a big hug

BEN:  thanks

ME:  I love u so much

BEN:  I luv u 2 mom <3 [heart on its side]

ME:  <3
xoxoxox ((((you)))) [hugs around Ben]

BEN:  :)
We are almost at the hospital

ME:  I was just going to ask
We'll text more later

BEN:  K we are there

ME:  Love u!!!!!

BEN:  I luv u 2

ME:  xoxoxox

BEN:  :)

ME:  Toby just giggled in his sleep!

BEN:  Wow thats kinda creepy

ME:  I guess he's having a funny dream...I'll have to ask him about it in the a.m.

[a little time passes]

BEN:  I just got my wrist band and we are going into the elevator

ME: Ok tlk [talk] later

BEN:  Kk [Okay]
They just took my whigh [weight] and i whigh [weigh]128

ME:  Congrats. :)

BEN:  :(

[Two hours pass, no texts, I slept]

BEN:  There about to come get me for surgery

ME:  Ok I love u!!! How r u?

BEN: Good me and dad watched very funny tv

ME:  sorry u had to wait so long

BEN:  Its ok actually it was nice

ME:   Excellent! You're gonna do great and I'll talk to u when u get out
I'm so proud of u

BEN:  Ok

ME:  It helps knowing what to expect
Doesn't it?

BEN: I like the shoe sock things there comfy
And yes

ME:  Great get a few before u leave

BEN:  To take home i like socks much better than these

ME:  Oh whatevah
No iv yet?

BEN:  Ya anyways mom i luv u vry much

ME:  I adore u

BEN:  Nope get that in surgery

ME:  xoxoxox
Ok
(((((hugs from me to u))))))
xxxxxxxsmoochxxxxxx

BEN:  (RE: ((((hugs from me to u) K im in the bed

ME:  Oh thought u were already

BEN:  Im a little nervous
Bye mom ttyl [talk to you later] luv u

ME:  That's to be expected
Bye!!!!!
I luv u!!!!!
Ttyl

[break of several minutes]

BEN: Hiya mom it turns out that i only was going down to talk to the docters and i'll be under in 15 mins so hows it going?

ME: Oh!!!! it's going fine!
I was sending you big blessings.

BEN:  Thats nice im less nervous

ME:  Amazing

BEN: Thank u

ME: How come d'you think?

BEN:  Thats good
Huh?

ME: How come youre less nervous?

BEN:  I dont know everyones very confedent and calm

ME:  That's great that u can take that in
What did the doctors say?
And did u have an xray this morning?

BEN: That im going to go in breathe then fall asleep and no

ME: Ok
Sounds easy

BEN:  Yup im gonna be fine

ME:  u definitely r

BEN:  Yup u should take somthing to calm down

ME:  And when u get out it's gonna be even easier then the last time
I'm calm, cuz u r

BEN:  Yup

ME:  I should say calmer
I was more nervous last time
But thx for thinking abt me

BEN: Still u should

ME:  I'm fine, sweetie
Just lying in bed
Txting my boy

BEN: Hmm anyways calm down i can feel it in your txts

ME: Oh sorry I really am fine
Maybe I'm asking too many questions...?

BEN: Sure u r sure

ME: Lol
I wouldn't send u there if I didn't believe they would take excellent care of u

[pause]

Well it's my job to be a little nervous!
But really I'm just fine

BEN:  Yeah
wel....................................................

ME: =)

BEN: Sure u r sure.......O.o

ME:  8)
:P
xoxoxox

BEN: jsshdikisabusukjkszdekjdszeksejzjzjedsmeds im not crazy BOOGA BOOGA MOOGALY tell that to tubs [Toby]

ME: Um...ok...when he wakes up.

BEN: Wait what time is it

ME: Hey! did they give u something to make u loopy? Cuz it suuuure seems like it!
7:33 am

BEN: No im just naturly crazy and oh thanks

ME: Too much time on your hands, it seems...

[long break during which I play Spider Solitaire on my iPhone]

Hey u there?

BEN: Barely
I am about to go
i luv u soooooooooo much

ME:  Ok I LOVE U
Love u more!!!

BEN: <3<3<3<3<3<3<3
         <3<3<3<3<3<3<3
         <3<3<3<3<3<3<3
         <3<3<3<3<3<3<3
         <3<3<3<3<3<3<3
         <3<3<3<3<3<3<3
         <3<3<3<3<3<3<3 [32 lines long!]

ME:  You're the best! xoxoxox

Surgery the Sequel: Chapter Four

I was visited by a memory this morning. It swooped in on me as I trudged up the stairs after feeding the equines and cleaning the pasture, kicking off my boots in the mudroom, and padding past Ben and Toby sitting on a window seat happily engrossed in a game of Magic: The Gathering.

The memory is this: I am sitting on our cushy love seat, Toby tucked in close on one side, Ben on the other. It is the day after Ben has finally, FINALLY come home from the hospital after having four surgeries for Chiari I malformation, two months to the day since the first surgery took place. I am feeling that I never ever want to be away from my children. I want to keep them home, next to me, safe. Whatever it takes.

Deja vu.

Ben is home again, and he is almost pain-free. He appears lighter in body and spirit. He is calm and even. Happy, considerate, grateful, mellow. He has focused on Toby and playing with Toby all day, much to Toby's intense happiness. The baby brother really REALLY missed the older one.

Driving Ben home from the airport last night we talked about being apart from each other while he was in Philly. "I'm going with you next time," I said.

Silence.

"Weeeeell, I don't think so, Mama," Ben said. "Daddy can move me, help me get up, reposition me," he paused, "I really need him for surgeries...and he doesn't mind helping me pee into a bottle."

Well huh. I protested a bit. ("I don't mind helping with the pee bottle!") But, I guess I can handle this.

I just want everyone to know that we're all lighter here today. We're at peace because our Benny is doing so well. Mark's coming home early from work, it's Make-Your-Own-Burrito night for dinner, and the piles of dirty laundry are scattered in front of the laundry room door. Life is getting back to normal.

But next time (9 months from now, according to Ben's surgeon), next time I'm going with him. (Anyone know of a place that I can order an extra large duffle bag from?)

Surgery the Sequel: Chapter Two

Our Hero Bounds Back

 

Next time I’m going with him. 

It didn’t occur to me until right before Ben left for Philadelphia that I’d never been apart from him when he had a surgery. Never, not once, in all the seven surgeries he had was I in even another building. And this time, surgery #8, I was across the country. That’s a bit too far.

It was not easy. For me. For him. I don’t want to repeat it.

I’ve never been with my other children when Ben’s had surgery either. I’ve never seen their anxieties rise to the surface, I’ve never hugged them before bed the night before his surgery to reassure them he would be okay in the morning. I’ve never seen their joy when hearing his voice after a surgery. And felt their relief when told he was on his way back to the hotel.

Until today.

Not that I didn’t know they felt all those things, but being present with them, and realizing that they also need a parent around during these moments of family crisis was important.

Last night Ben called before going to bed, completely undone by the distance between the two of us. It took a lot of self-control to console him and peel him off the phone into Mark’s arms. He requested that Harry, listening in on the speaker phone, invent a transporter device immediately so I could get to Philly on the double. He asked about 75 times that I hop on a plane and fly out to be there in the morning. His voice was like a small child’s, so vulnerable and sweet. Why did I agree to stay home, I asked myself.

But Toby held my hand as we walked up and down the stairs getting ready for bed, collecting toothbrush and toothpaste, a book to read, his retainer. I needed to get some emails out and update my Facebook status, and he spent the whole time calling from my bedroom, “Are you done yet? When are you coming in here?” Harry gave me a bearhug on the way to bed, after a long anguished day of the blues. I’d attributed it all to general teenage angst (I am so blind sometimes), but this morning he said, “You know, I think all that was about Ben.” You know, I think he’s right.

Next time, I think we’re all going with Ben.

Time has been surreal today. I few hours after saying goodnight to Ben, I awoke at 3 am, to call him as he rode in a taxi to the hospital. It was 6 am in Philly. He was still scared and unhappy, but at least the night was over. I noodled around, playing solitaire on my iPhone (and aggravating my carpal tunnel pain!) while I waited to hear from Mark that Ben had gone in to surgery. About 45 minutes later I got that call and somehow made my way back to bed, falling asleep until the next call, that he was out! Again falling asleep, I was awakened to hear Ben’s voice, groggy and fuzzy, but alert enough to tell me it was over and he was in his room with Daddy.

The sun was up here. At any rate, it was light and foggy outside. Toby woke as I squealed into the phone with delight. “It’s all done! Ben’s out of surgery! Do you want to talk to him?” I asked and so Toby’s first words were for Ben today.

Fast forward through a day of calls and emails and Facebook status updates, it’s 5 pm here and 8 pm there and Mark and Ben are waiting to be discharged. Tonight!

For those of you still unclear on what exactly took place today, here’re the gory details:

• An incision is made on his upper back, into a previous incision, I believe.
• The screws that hold the rod onto his ribs (with hooks) are loosened.
• The rod is moved down about a centimeter.
• The screws are tightened.
• The incision is stitched up and bandaged.

Two hours under anesthesia, but really only about 40 minutes of surgery.

He was given the IV after being sedated which took a huge amount of anxiety and stress off the beginning of the process. He has a large fear of IV’s having been a human pincushion at one point in his life! He had morphine post-op but hasn’t needed any pain meds since. He’s walking around, drinking, eating, joking, peeing…everything you want in a patient before being discharged.

I called and alerted our forces at the RC about our hero’s return. Earlier than expected, but with admirable wounds to prove his mettle. Because of our caution he has three days to play in Philly. A good thing.

Did I say I’m going with him next time? Did I say we all are? Just wanted to mention that.

The Kindness of Strangers...and others

I must have a look on my face right now. Gray clouds, lines of worry on my brow. A complete and total stranger asked me if I would like a hug just a moment ago.

Picking up a travel game and a cup of iced coffee at a local book store I was asked by the man behind the cash register how I was doing and, of course, I told the truth, never one to just say “Fine” and be done with it.

“Oh, it’s a challenging day,” I said, darkly, I suppose.

“What’s going on?” He asked me. And I told him.

“My son’s having surgery at the end of the week and it’s just difficult leading up to it,” I said. Wondering why I was sharing with a total stranger. What’s the point, really?

Turns out his nephew had three surgeries for scoliosis as a young child and is doing great now. He passed me my iced coffee. “Well, I hope it all works out for your son,” he said.

“It will,” I assured him/me. “It’s just difficult as it all comes bearing down,” I ended. I turned away, moving towards the side counter to add cream and pop on a cover.

He looked at me over the espresson machine on the other side of the counter. “Do you want a hug?” he asked.

Wow.

I turned him down with a smile, knowing I will soon be amongst some of my best friends at a homeschool park day and then later on the couch at our therapist’s office. It’s a day of many hugs both virtual and actual. Thankfully.

It’s Tuesday, just one day before Ben and Mark take off for Philadelphia. In less than a week Ben’s surgery will be over and he will be feeling fine, most likely. But the lead up, the waiting, the uncomfortable expectation is so difficult for all of us. This morning Ben’s first words to me after arising from bed were, “I don’t feel good.”

“What’s up?” I asked knowing it could be therapist-itis, post-playdate exhaustion, or pre-surgery blues. It was the latter. “I want a different back,” he said.

Poor guy. It’s hard to shake those blues.

The good news is I was able to arrange with the chef at Sur la Table to rearrange her curriculum to accommodate Ben’s schedule so he could take make up classes today and tomorrow (having missed two days of cooking camp a couple weeks ago due to a cold) before leaving on his journey. I dropped him off this morning in the store’s kitchen where he stood shyly eyeing the pretty teenage girls on the other side of the table as well as the pasta machines piled on the class’s work tables. “Good food and women,” I overheard him telling some friends the other day, “that’s all I need!” I predict his needs will get met this morning.

I haven’t done a very good job of predicting our needs presurgery with these most recent two. Of course, when he had his brain surgery four and a half years ago it all happened so fast I didn’t have time to prepare us. Boom, bang, bop. It was upon us. But this time and the last I had months to mark off the calendar or think about what we’d need and be going through.

As it happened, I was off the mark repeatedly. For the surgery in February I had no clue that in the two weeks leading up to the surgery I would be a germ’s worst nightmare and an absolute freak on an antibacterial crusade. We had all sorts of plans, all ultimately cancelled, during that time period that involved sitting in crowded theaters with hundreds of coughing, innocent but germ-infested citizens, or playdates with children with runny noses. I didn’t even contemplate all the germs we’d potentially encounter on the plane flight back east or the train ride from NY to Philly. It’s amazing we survived without mishap.

This time we had to take a surgery date that conflicted with a camping trip with other homeschoolers in Yosemite. I thought, “Great, one parent will go with Ben, one with the other boys.” Neat and tidy. He picked Mark to join him (“Mom’s my emotion parent, Dad’s my hospital parent.” Logical enough.) and so that was that. I was going to Yosemite. But as the time has approached not only have I grappled with the anxiety that is rolling over me about not being near him while he’s in surgery, but I realized that I will not be sleeping a lot while he’s gone, that I’d have to be focused on getting the rest of us packed up for a challenging camping trip at 9000 feet, and that once I’m in Yosemite I would be out of cell range and unable to talk to him. Clearly, this was not going to work.

I’ve rearranged things now so that Harry will be going on the trip with my good friend Laura and her son, Harry’s friend Wyatt. He’ll get the forest time he needs, attending Yosemite Institute naturalist programming for four days, surrounded by our homeschool friends the whole time. Toby and I have chosen to stay back, close to the phone, our critters and our burgeoning garden. We’ll be spending some happy and distracting time in Santa Cruz with my sister-in-law Sharon and her husband, Alan, as well. No one questioned my last minute change of plans. In fact, all of my friends agreed I was making the right decision. But the stress is much reduced.

I got an email last week from my pen-pal Rona, my emissary of immense good will from Philadelphia. Rona contacted me about a week after we’d returned from Philly in March. The mother of our beloved Dan the concierge, she had read my whole blog (Hi Rona, I know you’re reading this!!) and heard all about us and offered not only her friendship but her love and care of our family. She told me that their family was our adopted Philadelphia family and we embraced her right back. She and her husband will be taking Ben and Mark around Philly on Thursday for a (distracting and) fun tour of their city. I’m just sorry to miss the meeting.

So we are embraced. Embraced at the cash register at Copperfield’s Books, embraced by the cooking teacher at Sur la Table, embraced by our friends and relatives, original and adopted.

I’ll keep you posted.

p.s. I apologize for the lack of photos of late. Having some major technical difficulties here in my house full of IT personnel. Hope to have things ironed out in a week or two.

Sick Day

To be sure, life has not given me many opportunities to sit still of late. But today I am quiet with the tail end of a cold, the boys are tucked away nose to the screen, I'm sure, with Pokemon or Firefly or Team Fortress 2. I don't have the energy to argue, and besides, it gives me a chance to update my blog!

Both Harry and Toby returned last Sunday from weeks away at Camp Tawonga. Harry was there for three weeks as a Specialist in Training. It was energizing and fun, full of new friendships, inside jokes and new responsibilities. He seems to have thrived in so many ways while there and plans to return next year to do it again. Toby also loved camp, but he says not as much as last year. Hard to believe since his big brother was there as a staff member at the same time, but this is what he says. Harry also related to me that Toby seemed homesick a lot, even into the second week, which surprised me. Maybe it's hard to go back the second year when you have been envisioning it as a repeat of the first wonderful camp experience. Maybe it just can't live up to that memory. Anyhow, he's still talking about "next year" when he goes back, so it wasn't bad.

On this end, it is good having them home and after the initial bumpy "reentry" period life seems to be back to normal.

Ben had a particularly hard time accepting their return. Life as an only child for my middle son was quite sweet! He and I travelled to LA to visit Papa Joel and many cousins two weeks ago. We stayed at the Best Western Sunset Plaza on the Sunset Strip. The hotel had a lovely pool. Got to have an eyeful of the babes du cosmetic surgery lining the pool's edge, too. I'm sorry, but boobs just don't come like that naturally! (Ok, so I've truly become a cornpone, living in the country as I do, gray hair, no make up and definitely, no cosmetic surgery for me! I just think bodies look better au natural.) We had a good trip, saw lots of family and friends in a very short time, and spent some quality time together, too.

Last week Ben and I went camping in Mendocino with several other moms and kids. The kids played LARP (I've mentioned this before, Live Action Role Play with foam weapons, etc.) and the moms hung out together. It was a fantastic week. The moms really bonded and the boys had amazing adventures for three days straight.

Most challenging for Ben was the pain he has begun to feel as his curve gets worse. The downside of the adjustable rod technique is that while he grows it holds his spine down and it seems Ben was feeling more aches, more muscle spasms and less flexibility during his heavy play. This was new. He'd been very active until recently with both LARP and swimming. But, the length of the days playing, the intensity of the play, and the constant bashing of swords against brace and body took their toll. By the middle of the second day he was in excruciating pain.

Face white as a sheet I took him into our tent, laid him down and tried to soothe him with word and touch. Not much helped. His mood became very dark. These are such difficult days for Ben. I recall the time, in the months before his February surgery, he hid in his closet crying and wanting to kill himself. Again, he has hit the bottom, wanting to trade in his life for another issue. Being unable to engage in his favorite activity took everything out of him. "I hurt," he told me as we sat in the warm tent. "Where is the pain? Can I massage that spot?" I ask him naively. "No, Mom. I HURT. Inside. All of me." I am blown away by his ability to talk about that emotional pain. His sharing it with me. I ended up just sitting, quietly, waiting for the hurt to get more fuzzy as his energy returned.

Eventually, he went back to play with the other LARPers. He had struggled with wanting people to know his situation and wanting no one to know. Wanting accomodations and not wanting to do anything different. It's a hard line to walk. Sitting in the tent we had talked about the challenges everyone faces, that he is not alone in facing demons, overcoming obstacles to just living life. In a group of homeschoolers it's easier to find the kids with issues, of course. We tend to be a self-selected group of square pegs! But that is excellent. Especially for my boy who up until he turned 8 lived a golden life in which it all came so easily to him. Not much easy these days.

The next surgery cannot come soon enough. Two weeks and a couple days from now. He is brewing a cold, which I pray does not blossom. Any respirartory ailment could cause the surgery date to be postponed and that could mean waiting until October! I don't actually think he could do it, the pains being as severe as they are. So he is in bed, sipping chicken broth and watching movies on Netflix instant download.

I will be taking the boys camping on Sunday for a few days with our new homeschool crowd, a group of very wonderful moms and kids all seeking deeper commitments and relationships in our community. We're again going up to the Navarro River in Mendocino county, but this time just to lounge, play in the river, hike around, and roast marshmallows at night. We're packing our board games, knitting, foam weapons, and nerf guns. How well rounded!

When we return we'll be packing Ben and Mark for the journey to Philadelphia. I'm putting that aside for the moment. It's a lot to hold on to, you know?

Catching up

Foggy summer morning in our new garden.

I would have to agree with my friend Sarah who said recently that the longer you stay away from your journal the harder it is to return to it. I have definitely been remiss with this blog but life has a way of getting in the way. I have been overwhelmed by the minutiae, and unable to find enough time to gather my thoughts, cull through them, and focus on this task.

Truth be told, the main reason I didn’t write a post just after Jasmine’s wedding was that the only thing I could really talk about was slugs. Yes, slugs. SLUGS. With all the wet weather and then the warmth, the slug population in our area has skyrocketed and there are slugs everywhere. In the garden, on the front porch, all over the hay barn, on the wheelbarrow, inside the grain bin, inside the grain bag.

There were so many all over the hay barn, that I adjusted how I dressed for the task of feeding the animals every morning: cowboy hat pulled snuggly down to my ears, flannel shirt buttoned up to my neck, collar up, even as the weather warmed up. The thought of one of those slugs being shaken loose and falling onto my head and down into my clothes almost kept me from the job. They are baby slugs or a small variety, but their tininess doesn’t make them less disgusting to me. People keep saying, “Too bad you don’t have chickens” but if I did I’d then have to face the fact that chickens eat slugs and then I eat their eggs…better not to know.

Slugs on the outside of the hay barn as seen from the inside.

Above L, the hay barn. Above R, slugs as seen on the outside of the barn.

It offended me to follow such a pretty post with a post about slugs. But for a bit, that was all I could think about. So I didn’t write.

Almost three weeks later the slug fest is pretty much over and I feel that there’s enough space between the slugs and Jasmine’s wedding to proceed.

The slugs (guess I am not quite done) have been ravaging my garden as well. Despite the copper tape edging all of my raised beds and the saucers of beer that I’ve put out, there are nibbles taken out of almost every leaf and some crops have had a hard time overcoming their place in the late night buffet. The weather has changed enough that I think we’re getting ahead, the garden is bursting with new growth. I almost wrote “Maybe there’s enough for everyone” and then changed my mind. There’s not. I’m selfish about my garden. I want it all for us humans at Three Boys Farm. The tomatoes, the beans, the lettuce, the tomatillos, herbs, and nasturtiums. The pumpkins and cucumbers and squash. The flowers that the boys planted. I want it all for us! That’s why Mark and Harry built so many gorgeous gopher-proofed raised beds for me this year. No sharing! Once we start harvesting, if you’re human come on by. If you’re slug or gopher, this offer is not for you.

Summer is officially here. The camping trips, beach days, afternoons at the pool or the Russian River, and Fanwar (LARP: Live Action Role Play) events are filling the calendar. The boys sleep late while I go out to feed the animals and water the garden. I love this weather as I have always loved the beginning of summer, when you can really appreciate the change of seasons.

People ask me if we stop homeschooling for summer and I usually respond that our whole year looks more like most people’s summer vacations, so no, I don’t tell the kids, “It’s June. Stop learning.” and when September comes around, “It’s September. Start learning.” Our homeschool life IS learning. Wherever, whenever. We’re not gathering every morning to say the Pledge of Allegiance and the boys don’t sit in desks doing penmanship. There are no timed quizzes and there is no extra-credit busywork. By my bedside table are some new books that are inspiring me about science and nature journals, and one called Macbeth: for Kids to get us prepared up for the Sebastopol Shakespeare Festival next month. But no, we don’t stop for summer.

I saw some school kids the other day in town, a small gang of teens in cut-offs and tank tops, and they had the definite look of kids just set free from school. A wave of recognition swept over me, a sensation I remembered very distinctly, that feeling one has the first week of summer break. It’s pure freedom. No homework, no early morning bus rides. No pressure. I grew up in Santa Monica and those first weeks of summer were amazing because we’d grab our towels and hit the beach, just a few blocks from my home. This season was such a contrast to the rest of the year, not to mention the weeks preceding the last day of school/first day of summer break that had so much anticipation built in. The weather was warm and the ocean was calling to us.

My kids don’t have that definition in their lives even though our activities change during summer. Their lives have so much more freedom on a regular basis that they don’t chafe at the end of spring to be set loose. That makes our life different from a school-based life. Better in myriad ways, I believe, than it would be if we were sending them to school every day. But I still felt the nostalgia for the traditional when I saw those kids in town the other day.

Harry’s bags are packed and his hair is newly shorn for three weeks at Camp Tawonga. We’ll be taking him to the camp bus pickup tomorrow morning. This summer he’ll be an S-I-T, Specialist in Training, his ultimate goal is to be the arts and crafts counselor one day. We’ll miss him, but it will be a great experience for him and he has always loved Camp Tawonga. Toby will join him in a week, and is thrilled that his big brother will be a “counselor” while he’s there.

The rest of the summer holds three camping trips (two to Mendocino and one to Yosemite’s Tuolumne Meadows), cooking camp for Ben at Sur la Table, and the Homeschool Association of California’s annual conference in Sacramento.

Oh, and a surgery for Ben.

Three weeks ago we took another x-ray of Ben’s spine and found that his curve has progressed to 27 degrees, up 12 degrees from the last x-ray. This is a sign of growth. As he grows the rod is holding his ribs down and so we need to get him to Shriners Philadelphia so Dr. Cahill can get in there and adjust it. Just a centimeter…or should I say, a WHOLE centimeter! We just got the surgical date (July 30) this week and have begun to make the arrangements. Ben and Mark will be going while I’m in Yosemite with the other guys. We had two choices of dates, July or early October and the latter just felt too far away with the amount of change we’d seen in 7 weeks. Also, Ben had already opted out of the Yosemite trip, so it wasn’t a real conflict for him. Well, on one level, anyways.

I called the Ritz-Carlton yesterday. It was just like I remembered. As soon as I said who I was (speaking to the general manager’s assistant) I was greeted with, “OH!! How is BEN?! Everyone is asking about him!!” Within minutes the wheels were in motion and a “superior” room was booked for us and I was arranging for our star to have a tour of the restaurant kitchen one of the days he’s there. Those folks are so incredible. They want to do anything to make Ben happy, it’s truly incredible. Ben and I were interviewed recently for the Philadelphia Inquirer about our stay there, since now the hotel has developed a special program called the Medical Concierge, to help people staying there who are in Philly for medical treatments. Ben’s quote is priceless (“They treated me like a god”), and his story was the lead story in the article. His picture (from my blog) graced the front page of the newspaper. If he was a rock star there before, he’s a mega star now. I’m sure he and Mark will really get the royal treatment.

That helps a bit, but this is Ben’s personal rollercoaster of emotions and he’s having a hard time of it. Just when he was feeling really good physically (running around and battling with foam swords at Fanwar events, and rolling and jumping into swimming pools), he’s facing down his demons again. July 30th is just around the corner, but it feels like February 15th was not so long ago. This surgery should be much less difficult, with fewer hours under anesthesia, only a day in the hospital, less pain, if all goes well. However, as much as he enjoys seeing his friends and fans and being pampered at the Ritz-Carlton, I think he’d trade it away in an instant to have what he calls a normal life. He’s had seven surgeries in his 12 years, with more to come, and that is bitter for him. For his mama, too.

If you’ve made it this far through my post, I will say thank you. And, I promise to try to keep up with my posts, even if it means following up beautiful and sweet with disgusting and slimy. This, is my life. I need to appreciate the definition!

The inside story

Philadelphia is obviously sick of the snow. Yesterday the weather reports had people in quite the tizzy with the forecast of another approaching snowstorm. Today the markets are apparently cleared of milk, bread, eggs, and cheese, the schools are closing early, and the game shows are interrupted with news flashes about the weather, but here in our cozy, golden room on the 17th floor of the Ritz the flakes flutter down past our windows and nothing is sticking to the ground outside. And nothing much is bothering us.

I don’t feel any sense of urgency or panic. We’ve crossed the threshold and are on the other side. Ben, Mark and Grandma Joyce sit happily huddled around the ottoman playing cards, a game called 7-27. They all are numbers people. Not me. I’m a words person, as you might have guessed.

However, I’ll share some numbers with you today, numbers which are making us pretty happy, overall.

We went in for our follow-up appointment with Dr. Cahill this morning. He gave Ben the go ahead to return home. More on that later. We looked at x-rays and compared the day of surgery (35 degree thoracolumbar curve)

to two days after (down to 12 degrees!).

I thought you might want to see his new hardware.

5 staples and a hybrid adjustable rod,

which you can see is attached in 4 places,

on 1 lumbar vertebra and 3 ribs.

He is now required to wear the protective brace every day for the next six weeks, but not at night. Following that he’ll need to wear it whenever he participates in activities which would entail twisting, turning and bending. This will hold true for the first 6 months following surgery. His activities are not limited except for a prohibition on all contact sports, bungee cord jumping, parachuting, rock climbing, motorcycling, trampolining, and jumping on horseback…until the rod comes out. (It would figure that Ben has all of those sports on his personal “to do” list. Well, he’ll just have to wait!)

His first lengthening will be in six months (September) and will entail a trip to Philly, a short surgery and a night in hospital. The distance makes it a bigger ordeal, but we will get used to it.

We talked with Dr. Cahill about long-term planning for the rod. It is possible that Ben will have to have more than three lengthenings and even possible that he’ll need a second rod. We are in uncharted territory. That’s how new this technique is. But, as you can see, it’s accomplishing quite a bit, getting a straight spine in a way that a brace never would have done. The day of surgery Dr. Betz (the chief of staff and the innovator of these techniques) was concerned about his thoracic curve and talked about possible fusion in the future. Looking at his x-ray post-op I’d say it looks quite a bit straighter. Time will tell.

Our plans now are to leave on Monday. We have tickets to return on both Saturday and Monday. Mark would love us to leave on Saturday, but that is in keeping with his desire to be home, be done with it all. And his typical disconnect with pain. (One day I’ll tell you about the time he broke his elbow playing racquetball and continued to play for a couple hours and didn’t even go to the hospital until the next day. Uh-huh.) I am of a more cautious nature and I just don’t want to push it. And, might I add, I’m the MAMA. Yesterday Ben went with only Advil for pain management all day, but by evening was in such pain that it was hard to go to sleep and woke him several hours later. It took an hour to soothe him back to sleep (with Valium and Hydrocodone on top of his Advil). With the snow coming in today and lasting through Saturday, travel feels dicey enough. We gave Ben the choice and looking at the sheer number of hours he’d need to sit up without a break (about 12), he decided to be cautious as well.

Grandma Joyce came to visit us yesterday from New York and is going home shortly in an attempt to outrun the storm. She brought homemade brownies and a deck of cards, an overnight bag and lots of enthusiasm.

She and Ben played cards while Mark and I went for a stroll through Philadelphia. (We found a sweet little neighborhood called Rittenhouse Square and two cool yarn stores. Not that I needed more yarn, but Mark made me go in and increase my stash…really!) We had a slumber party in our hotel room last night (not that we got much sleep) and she was waiting for us here when we returned from the hospital this afternoon. It was good for all of us to have her here, and especially good for her to see Ben in such great shape.

So, four more nights in Philadelphia. As Grandma says, if you have to be stuck in a place this is not a bad place to be stuck. A few more days of take out. A few more days of game shows, Olympics, and cartoons. A few more days of doormen, maid service and solicitous hotel employees. Then we’ll head back to California, brothers, animals, and our whole network of friends and family.

Of Bribery and Rollercoasters

Picture this: Ben is reclining in his hospital bed, fully rigged out in his “Shaky Jake” vest, the contraption that makes him look like he’s undergoing some rigorous protocol for NASA or something. The vest, filled with air through two hoses, is shaking him at 10 Hz (10 hertz = 10 shakes per second, or as Ben says, 10 HURTS!) for 20 minutes. His mouth and nose are covered with a mask and a foul smelling mist is blowing into it which he breathes and which purportedly helps to fill his lungs with oxygen, break up the mucus that has taken up residence there, and allow him to heal. Suddenly, he begins to hum. It sounds like the theme from Mission Impossible to me. This is entertaining! I join in, but I have to hammer on my chest to get the same effect. I break into Darth Vader’s theme song from Star Wars. He joins in. And just then, Lorenzo, our big teddy bear of a respiratory therapist comes in to check on Ben’s progress. “Lookin’ good,” he says softly. “Lookin’ good.”

Today was quite the rollercoaster. There were a few moments like the one above and then there was the walk down the hall that made Ben turn a shade called “Cement,” ask for a chair, and ultimately return to his bed to vomit up his breakfast. Later in the day, his face ashen, dark gray circles around his eyes, I couldn’t believe how much worse he looked from yesterday when his cheeks were flushed pink and he chatted with friends on the phone. In fact, I couldn’t believe how much worse he looked from 11 am this morning when he checked my profile on Facebook and wrote a comment back to our friends about how he was doing. Up and down. Down and up. I must admit, I’m exhausted to the edges of my eyelids tonight.

When we were first planning this event (How should I refer to this? Adventure? Journey? Certainly not vacation…), this experience…I was told to expect he’d be discharged about five days post-surgery. That seemed a bit “hopeful” to me (SARCASM). I mean, he was having two major surgeries in two locations on his body. But I was told most likely we’d be out by Friday or Saturday. Call me a skeptic, but after what we went through the last time he had surgery, deemed a “walk in the park” for neurosurgery, I was hesitant to take that 5 days at face value. For one thing, Ben’s only about the 14th kid to have the rod and staples done, and it’s even a lower number if you count having them done at the very same time. What I’m trying to say is, he’s not getting out so quick. Today was day 4 post-op, tomorrow day 5. At this point we’re looking at Monday.

This feels a bit like déjà vu. Ben is generally a healthy kid. He rarely even catches a cold. But when he goes through surgery his body does not seem to bounce back. It reacts as if it has been assaulted. Red flags up. All systems down. Like a deer in the headlights. I believe that one of the most difficult aspects of both this surgery and his Chiari surgery four years ago is that pre-op, if you looked at him he seemed just fine, and his body thought it was fine. It wasn’t like he was in pain or an invalid. The surgery was an imposition. The surgery was traumatizing.

No one at Shriners seems overly concerned about this lung issue, though for me, the mama, this was my biggest fear about the surgery. It was the complication I knew was out there. My friends in the medical profession all are familiar with the “shake and bake” (as my friend Nurse Shawna calls it) and, I suppose, it’s a necessary evil…does the job. Lungs collapse. The “shake and bake” opens them up again. I don’t know though…it sure sounds critical and scary to me.

Yesterday, I noticed that Mark was being sort of a softie with Ben about his lung exercises. He wasn’t pushing Ben to try harder to inhale deeper. I would sort of lean on him…”Come on, you can do more than that!” I'd say when he didn't seem to be trying very hard and I’d notice Mark furrow his brows at me with a “lighten up” look. Today I realized we needed to push him despite how hard it was for him to breathe deeply. It was a Catch 22. If he didn’t breathe deeply more often he’d be unable to breathe deeply at all. And the last thing I wanted was for pneumonia to develop. I took to lecturing myself about being strong, not backing down. But as I sat at his bedside it finally dawned on me that pressuring him wasn’t going to work. So, I considered…what does work with Ben? Aha! Cold hard cash.

Me: “Ben. Ok. Listen to this. I am going to pay you for your breathing exercises. Every time you get the inhaler up to 750 ml I’ll pay you 75 cents. If you get it to 1000 ml I’ll pay you $1. 1250 ml, $1.25. Understand?”
He narrowed his eyes at me. He raised one eyebrow.
Ben: “I’m going to make you go bankrupt!”
Me: “That’s a consequence I’m happy to endure. Oh, and that lung vibrator thingee? [another one of his lung exercisers that helps bring the mucus up] I’ll pay you $1 for every 20 blows OR one hack up of phlegm, whichever comes first!”
Ben: “It’s a deal!”

Needless to say, bribery works. You know, it’s been proven. Look at the Texas school system. And Ben, well, he’d earned 34 bucks three hours later. My friends on Facebook, apprised of the situation, have already begun to take up a collection. Hey, if it gets us out of the hospital sooner, it’s worth every freaking penny to me, and apparently to them, too. Love you guys!

Update: Thursday

It felt like Ben opened a door and walked back into his life again today. He barely remembers the events of the previous three days, which is the blessing of morphine and just as well. Today he was unplugged from all IV's, no longer on morphine (though on some other very strong pain med), and eating. He got up with less help and walked mostly on his own. Still shuffling, still baby steps, but even in this slow motion we are moving ahead.

His lung continues to be problematic but the doctors and nurses don't seem terribly concerned. He's had myriad x-rays taken of his lungs to assess the fluid levels. The critical care doctor reiterated tonight that part of his right lung remains collapsed due to mucous build up. Every four hours he has a therapy treatment which he abhors. A vest is velcroed around his chest. It is hooked up to hoses and fills with air and then shakes his chest, actually his whole body. His mouth and nose are covered with a mask that blows a sulphurous smelling medicine mist at him. He does this for 30 minutes. It hurts. But when he's not feeling the pain he makes it into a joke, humming or talking like a robot. Amazing that he can even have a sense of humor!

He can feel the rod in his back, a sensation I imagine he'll get accustomed to. Mark and I have seen it in x-rays and it is indeed straightening his spine. It is hooked onto three ribs and a lumbar vertebra. The hooks are screwed tight and it pushes up to help the staples do their work of straightening the spinal column. His titanium rod reminds me of the wooden supports the apple growers in Sebastopol use to prop up the heavily laden limbs in the orchards. We'll take Ben's support out when its work is done just the way the apple tree supports are taken away once the fall harvest is complete, though in Ben's case it will require anesthesia and morphine again. Ah well.

My cousin Hana (who lives in Philadelphia) came to visit tonight and was taken with Ben's whole demeanor. She walked into the PICU when he was undergoing the shake treatment and got to hear him use the robot voice. Then she accompanied us as we moved down to the surgical floor (which took several trips as we had already accumulated that much stuff!). Ben's new location is in a room shared with two other patients, and a bed for one more. A far cry from the cushy 10 x 15' private room in the PICU. Moving up and moving down!

Hana took me out to dinner at a really lovely Italian restaurant somewhere between the hospital and my hotel. It was relaxing not to have to worry about fending for myself dinner-wise. Hana and I always have a great connection when we see each other. She is my father's first cousin and knows quite a few stories about my dad's side of the family. I enjoyed our time together. Thank you, Hana!

Tomorrow (which is already today!) I will be finding alternate transportation to the hospital. I believe I'll take the bus. Last night as I was leaving Shriners the night guard said something to me about  driving home and I said, "Oh no, I'm taking the subway." "Do you have a gun?" he said. I looked at him funny and went on my way, though it crossed my mind that he might actually have some information I was lacking. The nurses in the PICU and I were talking about my subway rides today and I mentioned that comment to them and it was agreed that I should NOT be taking the subway. Bus = above ground = ok. Subway = underground = not. I was so naïvely tromping down into the subway stations, getting my tokens, going down to the platforms, bundled in my parka and my knit hat and scarf, listening to my iPod and intent on my knitting (and getting off at the right stop) that I honestly didn't realize it was considered a dangerous place. I didn't feel threatened, so I'm not changing my course due to that. Just making sure I don't tempt fate too many times on this trip.

Thanks to all of you for the emails and comments. I like knowing you're here with us in spirit.

And now...time for bed.

Just a note before bed...

Did I tell you this? When Dr. Cahill came into the parent lounge to talk to me and Mark after the surgery was over, I was sacked out on my chair, head on my balled up jacket, drooling. When I awoke I was so embarrassed...wiping the spittle off my chin! "Sorry...I'm so beat!" I explained. But then I realized who I was talking to...the man who'd been working on my son's spine for the past nine hours. "You must be exhausted," I added. "Not at all," he said. "I'm totally energized. Things went so well!" How's that for instilling confidence in your surgeon?

Ben looked pale and ill when we got to the PICU. Tubes coming out of everywhere. He whimpered with every breath and cried that everything hurt. Being the only child in the ward has its advantages and the nurses there are wonderful, gentle, calm, and knowledgeable. He asked to be adjusted over and over. Nothing felt comfortable. And honestly, it was hard for me to imagine a position that might work knowing he had two incisions on his back, several on this side, and a chest tube in his ribs. "On my side." "On my back." "Up a little." "Down." Many times he mumbled something I couldn't quite catch. "Do you want to go onto your back?" I asked, fairly incredulous. "No," said he, in a hoarse whisper, "the dragons are there."

Oh my poor Benny. The dragons.

It took some time for the morphine to kick in, but once it did (they also added Toradol to the recipe), he settled down to a more peaceful state. I stayed for an hour or so, but then Mark sent me back to the hotel. (Mark does hospital much better than I.)

It was snowing big puffy flakes by the time I got back to the hotel. I was craving a latte, something warm and familiar. So I went in (greeting all the lovely employees who always seem so happy to see me), dropped my backpack and bag of knitting in my room, grabbed a few bucks and walked across the street to Borders. Every Philadelphian I've met has said to me, "Enough SNOW!" They are so done with the snow which is crippling the city, closing off streets, slowing traffic. It's common to see cars completely snowed in on every street. I don't know how people get to work! But, for this California girl, the snow was glorious. I felt so high and happy, knowing my boy was "on the other side" as one of my friends from the VBS forum said. I'm sure I had a HUGE smile on my face as the snowflakes fluttered down onto me.

Tomorrow may prove to be challenging due to pain. But Dr. Cahill is hoping to be able to remove the chest tube early in the morning. And after that we should see a lot of improvement.

I will fill you in as much as possible. Thank you so much for all your love and support, blessings and prayers. They mean so much to each of us.

Surgery's over!

Ben's surgeon just came in to tell us everything went great. Ben's getting set up in the PICU and we'll be heading over there for the night. (I may not actually get back to the hotel tonight as it just started snowing.) Dr. C was thrilled with how everything went. No complications and the results look good. He showed us the x-ray and his spine shows significant straightening. What a relief!

I'm so tired...Mark should be, I'm sure he got less sleep than I last night, but he's doing ok, too.

The night will be rough. He'll have discomfort and pain (though morphine should help) and he has a chest tube which we've heard is very uncomfortable. Plus he was under anesthesia for 8 hours...there's always an effect from that.

Dr. C says they'll take a scan of his chest tomorrow morning and if everything looks good they'll take out the chest tube. That's supposed to be frightening, but not too painful.

Anyhow, we've just been called by the nurse to come see our boy!

Bye!

And so it begins, part III

(This is the third in a series detailing Ben's hospital stay. Feel free to read it chronologically or reversed. I just wanted you to have the most up to the minute reports possible, and my ramblings did seem to go on!)

Six am found me walking out of the hotel, waking up a cabbie, and on my way to the hospital. Ben was scheduled for 7 am x-rays and 7:30 surgery. His surgery is the BIG one of the day and only two were scheduled. The other one is already over (not sure what it was, but the little girl’s dad was only sitting in here with us for a short while). They’ve blocked off 10 hours for his surgery, but don’t expect it to go much over 7 or 8. Long enough, in my opinion. First they’ll install the hybrid rod (1.5 hours to prep him for that, 2 hours of surgery) and then they’ll do the staples (1 hour of prep, 2 hours of surgery).

When I went into Ben’s room he was watching TV and quite depressed. Knowing what was coming and feeling a huge sense of dread. He’d had a fairly rough night (IV pain) and Mark looked like he hadn’t slept a wink. But, as soon as he got up, got into his hospital gown, and was escorted by the nurse from the PACU (Pediatric Anesthesia Care Unit) he pepped up, turning on the charm, cracking jokes, looking chipper. We walked down for the xrays and back up to the PACU and the doctors came to start checking and prepping for the Big Event.

Dr. Cahill and Dr. Betz (the BIG guy, the Chief of Staff and the main innovator of these amazing techniques) came in to talk to us about the xrays. They said his curves had progressed a bit more, but the technique should still work on most of his spine. The trouble is apparently, that he has three curves and though the upper and lower curves are most likely compensatory for his main thoracolumbar curve, the higher portion may not be affected by the placement of the rod and the staples. This area is, fortunately, not torqued which means it curves to the left but doesn’t twist around as it turns, Dr. Betz said this gave him hope that it would straighten some with the surgery today. However, if it doesn’t and continues to progress Ben will need to have fusion done in that area. I don’t know when exactly. We’ll just have to wait and see.

We found out that post-surgery Ben will be wearing a soft foam brace until the first lengthening of the hybrid rod (about 6-9 months). Probably only during the day and it isn’t constricting the way the brace he’s been in is. So, hopefully we’ll get more compliance. I’ll try to get more info on why this is, but I think it has to do with motion and rubbing on the bones until the hooks that hold the rod in place wear through or off or something like that. Blech.

Anyhow, here I sit. The internet connection here is weak so I’m not sure if I’ll be able to post this or much more, but I’m doing what I can. It’s 12:20 pm, his rod surgery should be over. We’ll check in with the docs soon. What we’ve heard so far is everything is AOK.

Can you say "Ahhhhhh"?

The change is palpable. I felt the difference from the moment we left home: a sense of release because we were finally on our way, finally done waiting for that moment to arrive.

I sit now in Grandma Joyce’s living room listening to the tinkle of Ben’s laughter coming from the kitchen where he and Mark complete a crossword puzzle. There’s been a lightness in Ben these past 24+ hours that I haven’t seen in weeks. Even though his VBS/Hybrid rod surgery is still looming, we are all feeling a sense of ease about it now. It’s not just inevitable, it’s the best option for us and we’re here, we’re going through with it, nothing’s standing in our way. Not snowstorms or germs or anything.

Yesterday morning, as I collected the last minute items for our trip, I watched Harry and Ben hugging in the kitchen. Ben burst into tears, sobbing, “I don’t want to go have surgery!” and Harry held him tightly, bestowing a big brother bear hug he’s obviously been perfecting. It was a moment that I appreciated all the more after the squabbling and lashing out of the night before.

Sherry and her kids arrived to stay with Harry and Toby for the next couple days, Deborah arrived to drive us to the airport. (Friends have been “showing up” for us in so many ways lately. This is the golden light. This is the silver lining.)

The urge to move forward helped us be timely. Group hugs on the porch led to good-bye waves from the boys and friends we were leaving behind. We stuffed our immense luggage into Deborah’s little car and were on our way.

(The boys at home have checked in with us periodically since then. It was clearly a harder transition for them since they stayed behind, as my friend Sherry noted. But even for them, there was relief in finally getting through the moment we’d all been dreading. The line between Before They Leave For Surgery and After They’ve Left For Surgery had finally been crossed.)

In a nutshell, our travel day was smooth and the mood light. We arrived at the airport, unloaded our luggage (and payed the extra $30 for our 4th bag!), grabbed some brunch (Ben had “the best orange chicken” he’s EVER had!), headed to a quiet, unpopulated corner of the waiting area and disinfected it with our anti-bacterial wipes before “plugging in” to our technology. We’d talked about wearing sterilized masks for the whole day to stave off the unbelievable amount of germs that must be lurking there in every corner, but I chickened out once we arrived at the airport, feeling self-conscious. You know me, fashion over cleanliness, right?

Well, once we boarded the plane Mark and Ben donned the masks like good little patients. Mark’s philosophy: “Wearing the masks is good for two reasons, it makes people think you’re crazy or you have a contagious disease. Either way they avoid you.” No one sitting near us was hacking or sneezing, a plus. We disinfected our armrests and tray tables and our hands frequently, and keep popping the vitamins.

I surrounded myself with knitting while keeping one eye on the little TV screen on the back of the seat in front of me. My knitting project plans have been keeping me distracted, if not happy, while preparing for this trip. I brought along about seven Ziploc bags of yarn for a variety of projects AND ordered more yarn to be delivered to the hotel while I’m there AND have already scoped out the yarn stores near the hotel for those slow days after Ben’s been released from the hospital and is busily playing video games in the hotel room, I mean, recovering. My obsession with knitting is not a cause for alarm, it is still harmless, I believe. Like any of my crafty endeavors, I find the process totally absorbing and diverting. The knitting itself is meditative, just the thing when your sweet one is in surgery or recovering. And as the garment emerges, a soft pool of color in my hands, I get a tremendous sense of satisfaction. There’s really nothing else like it. Keeps my mind and hands busy and produces something beautiful in the end. Projects started: ice blue sweater, jewel tone beanie, blue scarf. Projects waiting in the wings: blue and yellow baby hat, fuzzy blue fingerless mitts, black and pink fingerless mitts, blue vest…and more.

Arriving in NYC, driving to Grandma’s house, we could see the piles of snow everywhere. For Ben and me, this was a first, as Ben says, to see so much snow in a populated area.

We couldn’t wait to get outside this morning to take a walk. The weather is cold, but not bitter. We were so lucky to have missed the blizzard that hit the day before we arrived! Sun was out and the snow was glorious still, not that ugly gray slush you get in a city after a big snow.

At one point, Ben trudged into the middle of Grandma’s front lawn and announced, “I’m going to make a snow angel!” at which point he flomped down, face first in the snow. “Ben. Most people make snow angels on their backs!” Mark informed him. “Oh.” And he righted himself immediately.

There’s something to be said for giving yourself extra time. Having planned to arrive a few days early to allow for weather issues meant we had time today for a late wake up, a walk through the snowy neighborhood, snow angels, snowmen, and snowball fights. Ben spent the late afternoon building a snow fort in the backyard, directing Mark to go upstairs to open the window and snag the best and longest icicles from the roofline.

At 5 pm we sent Grandma off to our great niece’s baby naming ceremony in Scarsdale. We were sorry to have missed it and would have gone, but being as crazed about germ exposure as we are right now, we decided to pass and stayed home to have a quiet pizza dinner from our favorite pizza parlor in New Hyde Park, Umberto’s.

When Ben came in from his snow extravaganza and had changed into snuggly warm sweats, the three of us sat down and listened to a guided meditation recording called “Preparing for a Successful Surgery” which Ben deemed boring and irritating, but what can I say, I got very relaxed!

Throughout this whole year we’ve been avid participants in an online forum for the parents of VBS patients. From that web source we found out about the technique and the amazing doctors at Shriners. Coincidently, one of the forums’ founders is a mom who lives with her family not far from Grandma Joyce, so tonight she and her 11 year old son David came over for dinner (I made sure they were, in fact, germ free!) and it was wonderful to chat and get to know them better.

Maria is petite and funny, with a strong side to her that is a model for me. (Mark says she’s a real New Yorker.) She is someone who gets what she wants, especially when it means the best for her kids. David, like Ben, had his scoliosis diagnosed first which then led to the diagnosis for Chiari. He was only an infant at the time! He had his VBS surgery several years ago, he was one of the earliest patients. And Maria is now a vocal advocate for Shriners and the techniques they innovate there for scoliosis patients. We had a great evening with our online friends. It was just like the rest of the day, positive, light and full of laughter.

Tomorrow we will head to Philadelphia where we’ll check into our ritzy digs.

More then…

and now for some scenes from our snowy day...