Friday, July 30, 2010

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.

Thursday, July 29, 2010

Surgery the Sequel: Chapter One

...departures and arrivals...

Ben and Mark left yesterday for Philadelphia. Toby, Harry and I waved and blew kisses from the doorway (ok, I blew kisses and Harry and Toby yelled, "Bye! Buh-bye now! So long! Have a great trip!") and then turned, breathed a sigh of relief and went back into the house.

The anticipation truly was terrible, but the reality was a relief.

The night before Toby was so anxious he could barely sleep, had nightmares about zombies and ultimately threw up. Mark, downstairs sleeping in Toby's bedroom to provide some degree of comfort, took care of the situation but didn't get much sleep himself. I was upstairs listening and then panic-stricken that Toby had the flu, had infected Ben and Mark and that they would either wake up with symptoms or arrive at Shriners on Friday barfing their guts out. Lovely image. I didn't get much sleep.

Ben, tucked in warmly next to me in bed, slept soundly.

In the morning, Mark and I refigured our plans for airport delivery. Rather than my driving them down to the airport shuttle he decided to drive them all the way to the airport giving them time stop in Chinatown (Oakland) for goodies for their flights. This also gave us time to make sure Toby was truly not sick. (He was fine!) And because we'd arisen for an earlier time commitment that left us with literally two hours to kill.

When Ben heard "Chinatown" he leaped out of bed and ran to get dressed. (Steamed pork buns and sticky sweet rice cakes are super motivating for my kids.) That done, he asked to play a game with me. So, out came the board games...and up until the minute they left the house the whole family sat on the floor playing Scrabble.

No fighting. No bickering. No whining or crying or hiding away with electronic toys. Pure, good old fashioned family togetherness.

A group hug of three brothers and they were out the door.

Throughout the day I received texts and phone calls from the wonderful folks at the Ritz-Carlton, making sure every "i" was dotted and every "t" was crossed in order for Ben to have the best possible experience. I heard from Kimberly, the Medical/Business Liason, who was on vacation. Kimberly, enjoy yourself!

And I heard from my boys. They called from Oakland International. They called from Phoenix. They called from Philadelphia when they were waiting to "deplane." Their day of flying across country was perfect. (Lots of cute babies, according to our baby lover, Ben.) He was in excellent spirits. They arrived at the RC after midnight and found they had the SAME room we had in February with the additional bonus of chocolates, cookies and cold milk waiting for them.

This morning they received hugs from old friends: Violetta (our housekeeper), James (the concierge), and Kylie (from the front desk in February, but who's been promoted to Guest Relations), and had breakfast at Dan(the concierge)'s favorite cafe around the corner.

Mark reports that Ben's comment upon awaking today was: "I think this time it will be easy."

Crossing my fingers, crossing my fingers.

Tuesday, July 27, 2010

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.


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.

Wednesday, July 14, 2010

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?