Our last night in Philly, our Wow Story

Deep, deep sigh.

Here I sit, our last night at the Ritz-Carlton, our last night in Philadelphia. We've spent tonight packing, watching the end of the Olympics, eating dinner, and saying goodbye to our RC friends. It's bittersweet, surprisingly enough. 

This has been an extraordinary journey. Bringing Ben here for a surgery we were feeling both hope and dread about was beyond hard. Without the care of Shriners, the Ritz-Carlton, the VBS forum, the internet, and our friends and family it would have been a long and lonely experience. Instead, this has been a healing journey complete with attention, tenderness, smiles, room service, calls, emails, long baths, adventures, and hugs both virtual and real. Tomorrow we leave feeling so tended to, so cared for (so sad to leave, in fact!). And with a straighter spine (in at least one of us)!

The last couple days we’ve been coming to grips with the end of this adventure. Ben has been feeling pretty well. Mornings are harder than later (but, heck, they’re harder for me, too!) and he’s needed less and less medication to still the pain. Even so, he still has occasional muscle spasms that send him to tears. He has perfected the helpless child routine, as well. Our poor old middle child has loved having mama and dada to himself (and to do his bidding) and I’m sure when reality hits back home it won’t be pretty. He’s also loved having the celebrity status that has encircled him here. I would love to tell you about every time he got the royal treatment, but I can’t…there were too many times! Today, though, he was truly blue and very cranky. He was sullen and uncooperative until I asked him if he was sad about leaving Philadelphia. He nodded his head and said he didn’t actually want to go home, he just wanted all his friends and family to come live here with him. He is going to miss the ritzy life and he’s going to miss Dan (the concierge) and all of our friends here at the hotel. The royal treatment, I have to agree, is beyond belief.

I don’t know what this place is, but it surely isn’t like any hotel I’ve ever experienced before. Clearly, something happens behind the scenes at the RC that is all about taking care of the guests. Every single person here has smiled at us with the most genuine of smiles. We have developed personal relationships with so many of the staff. My mom teased me tonight that I could write their biographies. (Dan, the concierge is out tonight with his mom for her birthday which he’s going to miss next week because he’ll be in Hawaii with his girlfriend. Kylie from the front desk celebrated her mom’s birthday today with a brunch in her teeny-tiny studio apartment. Violetta, our housekeeper, returned home tonight with a bag of yarn from me, knitting being something we bonded over these past two weeks.) I know it’s not all them, I know that some of this has to do with us. We are real, we care about people, too. But, honestly, they all started out with a directive, I’m sure of it, to treat Ben (and his parents) with the utmost of care and concern, to tend to his every need and desire. And they don’t just deliver. They clearly mean it, too.

Violetta and me

Kylie and James (concierge) and Ben

Two days ago I sought out Mike Walsh, the General Manager, to thank him for everything. Our conversation started with an update about Ben and his surgery and Mike shared with me about his niece’s spinal fusion surgery that took place in December. When I started in on my “thank you’s” (thank you for making this possible, thank you for having such a great staff, thank you for your generosity, thank you, thank you, thank you, thank you…) I got choked up and said, “I don’t know if I can say this without crying.” And he said, “Now don’t do that, you’ll make me cry!” and sure enough, his eyes filled up with tears. What a mensch. I mean, really. This place is incredible. I told him what I just told you. I told him that we were made to feel like family here. He interrupted me then. “You are our family now,” he said. And then he told me that if and when we need to return to Philadelphia we are to contact him first and we will get exactly the same treatment, the same price, everything. He said that the Ritz-Carlton takes care of all of their clients, the conventions, the patrons at the restaurant, the hotel guests, but our story, our experience is what they call a “Wow Story.” It’s apparently, what the RC is all about. They are the Wow Story, though, in my opinion. Wow, is about all I can say.

Two days ago we had dinner in the hotel’s restaurant, 10Arts. It’s very chic, great menu. When we were seated our lovely waiter, Joseph, brought Ben a pillow for his back. He called Ben by name (Ben's fame precedes him, we've noticed). We had our meal, ate almost every bite. We were stuffed by the end, but Ben insisted on dessert, so he ordered bread pudding. Out came the bread pudding and then…out came THREE. MORE. DESSERTS. The chef comped us three desserts. They just wanted us to taste it all. We managed to squeeze it all in (ohhhh, I was soooo full! But how could I be rude and turn it down?!). One of the desserts included something exquisite, something I’d never tasted before that was so delicious: passion fruit marshmallows. So sweet and tart and fresh. A marshmallow! Amazing. So, last night we went down to the restaurant just for dessert. I had to have another passion fruit marshmallow. But, lo and behold, they were all out. Oh boo! I wept faux tears. The waitress, Olena, felt so bad for me but I laughed. That’s just the way things go, of course. We had something else delicious instead, something with blood oranges. And chocolate beignets. Mmmm. Mark, clairvoyant as usual, said, “They’ll probably make us up a little bag of those marshmallows for our flight home.” Well, who should come knocking on our door tonight, but Olena, with two plates of dessert: 12 passion fruit marshmallows, passion fruit sorbet, a mini passion fruit cupcake, and a large marshmallow blob covered in candied pistachios! In the center was a ribbon of chocolate with the words “Fondest Wishes” in icing script. I tell you people, we are going to miss this treatment!

Olena, with the tasty passion fruit marshmallows!

I’m so glad we decided to stay a couple extra days. Yesterday Ben was definitely not ready physically to tackle a day of travel across the country. (We spent a lovely afternoon with cousin Hana and her husband Ira who live nearby in a suburb of Philadelphia.) But tomorrow will be easier for him. We will dose him up heavily with pain meds and hopefully the trip will be easy for him. We fly from Philadelphia to Phoenix and then Phoenix to Oakland. A wheelchair will meet us at the curb and take us to the gate. The break in the middle will give him a chance to stretch his legs, a good thing. My sister, Mara, will pick us up at the airport and drive us home. Thank you, Mara!!! The boys and my mom will be waiting for us in Sebastopol…everyone is looking forward to the reunion.

Hana, Ira, Ben and me

And soon enough this will all be just a memory.

But, we’ll be back, for our second Wow Story. And amazingly enough, we’re looking forward to it.

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.

Our boy goes straight to the TOP

There are so many folks here at the RC who are making our stay more than comfortable and more than special. One of them is Dan, one of the concierges, who is such a sweetie. He refers to Ben as Mr. President and he seems to have taken a liking to our boy.

Dan's a young guy with a big smile and a great energy about him. He checks in on us daily at least a couple times to make sure our needs are met. Yesterday evening Ben developed a yen for sweet potato fries and when I went down to Dan's desk to ask if he had any recommendations in the neighborhood, he said, "I'll get on that!" Within minutes he'd arranged with the chef at the fabulous 10Arts restaurant (in the hotel) to specially make some for Ben. "Just call down there and say 'sweet potato fries' and they'll take care of you," Dan said.  

So we did, and added a Banana Creme Brulee to round out the order. Not a bad first room service dinner, eh?

Yesterday, Dan checked with me to make sure Ben was going to be free today in the morning. He told me that he had something up his sleeve, something he'd been conjuring up especially for Ben. Today we called down to his desk when Ben was up and ready to go, brought him down to the lobby, and off they went, just the two of them. They crossed the rainy thoroughfare of Market St. to visit the very top of City Hall's tower.

The building is steeped in history and the observation deck that they ascended is 500 ft above street level.

Atop the tower is a statue of William Penn which weighs 27 tons!!!

Ben came back with lots of information and rosy cheeks. Dan had wheeled him over in the wheelchair, but they'd walked and climbed stairs and hung out, just the two of them, for about an hour. Our boy is doing GREAT!

What a memorable excursion and a super treat.

Midday update: Monday

I’m sitting in the jewel toned lobby of the Ritz right now. Mark and Ben are off on a jaunt to the Reading Terminal Market in search of smoothies and Thai food. I’ve opted to stay “home” today. (If only my girlfriends read this blog then I’d give you the details, but since this is blog has a mixed-gender readership, suffice it to say I preferred being in proximity to limestone and granite bathrooms over public toilets.)

Ahem.

Both of my boys were bundled up in thick jackets, and Ben was wearing a rainbow wool hat and chenille gloves to stave off the cold, sitting in the wheelchair we were loaned by the hotel. Ben has been holding himself at a very odd angle these past couple days. He walks with his left shoulder up by his ear in an effort to not antagonize the tender wounds on his back, I think. His color was a bit pale peach and his expression blue. Even the thought of Thai food wasn’t bringing on a smile. Yet, I can’t help but feel there is improvement here as yesterday he refused to even entertain the thought of venturing outside.

Thankfully, he slept long and hard last night. We had a straw all ready but he didn’t stir until 5:30 at which point I gave him some pain meds. He kept on sleeping until 11 am! It’s hard to balance letting him sleep with keeping him on a medication schedule, but his sleep was so deep that I chose to honor the dream state and its healing properties.

I have a bag with my knitting at my feet. Right now I’m working on something blue and fuzzy. Upstairs I have a thick wool cardigan going for myself, and have finished several pairs of warm fingerless mitts. I think I brought enough yarn to last me several months and I even bought yarn online and had it sent to the hotel in case I needed something else. I may even go visit a local yarn store a few blocks from here, just because I can. My knitting craze knows no bounds. I pictured myself sitting and sitting and sitting (which has proven to be true). And I wanted to make sure I had yarn for any mood, any project. I brought skeins of wool and alpaca, thick and thin, black, blue, yellow, multi-colored. The maid who has been taking care of our room since we arrived, Violetta, commented on my yarn and told me she also loves to knit. It turns out she is from Albania, and I was excited about a double coincidence: one of the most wonderful people I’ve ever known, my Great Aunt Violet, lived in Albania when she was a young woman because her father was the US Ambassador to Albania. Apparently King Zog of Albania took a fancy to her (she was quite the adorable little thing) and proposed, but luckily for our family she turned him down and came back to the states whereupon she married my Great Uncle Arpad. But I digress.

One would imagine that Mark would be a bit critical of my yarn fetish and my obsession. He, personally, has no use for wool garments. He’s superhuman and never gets cold, it seems. When it’s recommended to dress in layers he thinks that means a polo shirt and his leather jacket. But, you know Mark, he is generous to the extreme and since knitting appears to make me happy, it makes him happy too.

He’s such a unique individual, my husband. I’ve sung his praises before, rightly so. He is smart, capable, generous, funny, practical, loyal, lovable, reliable. And handsome. Rugged, these days. I’ve never met anyone else like him. But I’ll say that as soon as I met him I knew he was a grownup. He comes in mighty handy, too.

When I had known Mark only one month he was involved in a terrible accident at his work. A large machine he’d helped design and build that boiled and purified sulphuric acid exploded all over him and two fellow workers. They were sprayed with shattered glass and cold sulphuric acid (fortunately, it was not boiling at the time). Mark, who got sprayed probably second worst, was the guy who made sure EVERYone was ok. He got people into showers, knocking the low-flow shower heads off the pipes in order to get the necessary gush of water into their faces. He got the emergency crews there. When I heard from him that night (we had a date planned) he said he couldn’t go out, he’d had a bad day at work. I squeezed the real story out of him and he told me he didn’t want me to see him…his injuries were too horrible for me to stomach. I finally convinced him I could deal with whatever he looked like. I was adamant that I was going to tend to him that night. When I arrived at his house, I found him sitting in a chair with a pillowcase over his head, two eye holes cut out! This is the quintessential Mark story: he saves the day, handles the emergency, downplays his own pain, and still has a sense of humor. Unbelieveable.

Throughout our ordeal here in Philly, Mark has been my rock. There was never any question that he was going to stay with Ben at the hospital at night. This is what he did when Ben had brain surgery, 40 nights at Children’s Hospital. He is able to handle everything that comes his way there in the PICU…the technology (he can stop the machines from their errant beeping), the details (he notices and checks the medications going into the IV’s), and the lack of sleep (he just manages better on less than I do). He also doesn’t get squeamish about the medical stuff nor does he get emotional about the administrative stuff. He’s Ben’s best advocate at 2 am, no question. And it’s not that he doesn’t get emotional, period. When some Shriners came to visit us all got up in clown costumes (I guess they hadn’t heard clowns are scary!) and I tearfully thanked them for being Shriners and making all this possible, I looked over at Mark and his eyes were red and full of tears, too. My guy is a softie, but he’s the strongest softie I know.

It doesn’t stop there, as you know. I’d arrive every morning and he’d head out to find coffee and breakfast for all of us. At night he’d go out and pick up Chinese take out for Ben’s dinner. I brought dirty clothes and he’d take them down to the parents’ laundry room in the hospital and do our laundry. Every day he’s hunted and gathered whatever we needed, from vitamins to egg rolls to tampons to lattes. Oh and did I mention he’s also working?! He quietly answers 30 to 40 work emails a day, sends them updates, makes a couple calls. He never looks stressed or upset. Nothing seems to phase him.

I had moments last week of a passing guilty conscience. I mean, here I was every night tucking into the down covered bed in our hotel room, watching tv, catching up on emails or conversations with our friends and family, while he was squeezed onto an uncomfortable fold up cot or chair bed in the hospital. But, I also know our relationship is a finely tuned dance, and there are parts of this adventure that I have made the acquaintance of in excruciating detail. I must also give myself the credit for not shirking my duties. Ours seems to be a balanced partnership.

I don’t really know how to sum it up, other than to say I feel like one very lucky girl, hanging out here in our ritzy digs, knowing my wonderful guy is out there with our boy, making sure he gets his wish fulfilled: a tummy full of pad thai noodles, while begrudging me nothing. Big sigh.

Oddly enough I just ordered an iced tea, just as the Ritz’s front door opened and let in the chill winter air. We’re expecting rain tonight. Luckily, we’ll be warmly tucked into our cozy, down covered beds upstairs, together.

Oh, and for those of you who are interested, the current bribery tab for Ben’s breathing exercises excedes $150!!!

*******

A little later update: So, my beautiful boys just walked in…with presents for me, of course! Dark pink tipped roses and truffles. They wanted to get me a dozen chocolate noses (take a look at the photo below that I took of some a week ago), but only milk chocolate noses were available, which just won’t do. Thus, I received tiramisu and dark chocolate little balls of wonderfulness and roses. Mmmmmm.

It was a dream, Mr. President

We looked forward to our first night together back in the hotel, a good night’s sleep being unheard of in the hospital. And yet, I was somewhat concerned about Ben’s pain levels getting too high by morning without the aid of a nighttime dose. So when at about 3:30 am last night I heard him make a peep I was up and out of bed, Florence Nightingale in flannel jammies.

     Me: Ben, what’s your pain level?
     Ben: Mmmm?
     Me: Ben, what’s your pain level, honey?
     Ben: Uh…uh……what?

It went on like this for a while. He didn’t really register a pain level, but he doesn’t when he watching cartoons either, so I persisted. Since he was on the verge of consciousness I figured it’d be a good time to get out the narcotics, just in case. The first dilemma was that he was lying flat on his back and I didn’t want to lift him up, get him all the way out of bed, or even wake him up a lot more. The next dilemma was that we didn’t have a straw and there wasn’t an obvious easy way to get water in his mouth and then drop in the pill. I convinced him that I’d pour a little water in his mouth, which he wasn’t keen on. In fact, he started to get a bit agitated and upset with me. He argued. But I moved forward, Florence knows best.

I proceeded to pour water all over his face, neck, shoulder, pillow, and bed. Oh, he was happy with me then, I can assure you!

And I didn’t get the pill in.

That’s when he was fully awake and unhappy with his nurse. So we got Mark up. We decided to try a towel over the wet spot, but he complained it was itchy. We decided to move him to another location. He had his choice: A) the other side of the bed he was in or B) the third bed in the room which was currently looking remarkably like most horizontal surfaces do at Three Boys Farm…covered with our crap. We tried location A. But he was cranky and not able to maneuver himself into a comfortable position. So we tried location B. That worked…ultimately...but first we had to clear it off. So he had to wait. None too patiently, I might add.

At some point, once he was already situated in the new bed it became apparent that everything I did was just frustrating and irritating or hurting him more. So, I went back to my bed. After I dosed him up with pain killers.

He slept soundly till morning. And we’re just telling him it was a bad dream! (kidding)

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

Today was a quiet day. Got up slowly, took our time with every step. Mark hunted and gathered a bagel with cream cheese for Ben and coffees for us. Around lunchtime we ventured down to the gorgeous lobby to wander, stretch Ben’s legs a bit and have some lunch.

Everyone at the Ritz has been giving Ben the Royal Treatment. Dan, one of the concierges, greeted us yesterday at the side door of the hotel with a wheelchair for Ben when we returned from the hospital and then happily asked if he could give me a hug. He called a couple times to make sure we had everything we needed. He greets Ben with, “And how are you doing, Mr. President?” when he sees us. A charmer! Kylie and Keisha at the front desk were thrilled to see him up and walking today and fawned all over him. They wave whenever they see us. Violetta, our sweet maid, had tears in her eyes when she saw he was back. The restaurant in the lobby, 10ActLounge, comped us dessert today with our lunch…I like hanging out with a celebrity.

Ben is doing great with increased mobility every day and manageable pain. He was able to walk around the hotel quite a bit; we bring the wheelchair along just in case. However, I’m sure we won’t be needing it in a day or two.

He watched his free movie (donated by Keisha at the front desk) last night, “9”, by Tim Burton (Mark and I thought it depressing, but he loved it) and some cartoons and Olympics. Today there was a lot of video game play and creating on the computer. But he actually was feeling well enough to admit to being bored. I feel this is a very positive sign. We’ll be good and ready to go home a week from now.

I'll leave you with a few shots from our lunch in the lobby.

Oh yeah. Shirley Temples...

Ben's dessert of choice: banana creme brulee with salted peanut sorbet.

He's BACK!

Well, in case you check in today I just wanted you to know that Ben cleared his lungs, ate some lunch and got discharged from the hospital!!! Did I ever say anything about a rollercoaster ride?

Here's a photo of him enjoying the stash of chocolates (left on our pillows every night) that I saved for him. He's wearing a soft brace in camoflauge pattern which will help him remember not to twist or bend unsafely for the next six months.

I'll write more tonight, but for now just wanted to share the good, good news!

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.

Tonight in the PICU as I was saying goodbye for the night and chatting with the nurses and the doctor at the desk I realized I probably wouldn’t be seeing them again. Ben is being moved down to the surgical floor tomorrow morning and I won’t arrive until after that has happened. PICU nurses and are generally PICU nurses. I don’t expect to see them down on the other floors. They’ve all been so sweet and I love their personalities and the way they are with Ben. We’ve actually laughed a lot, if you can believe that. So, I said, “Well, since I won’t see you again, thank you so much for taking care of my boy.” And Q, one of the nurses…she’s called Q…said, “We’ll see you again, though, you’ll be back. Right?”

Screeeeeeech. We’ll be back for lengthenings in the not even so very distant future. Oh yeaaaah.

When I sit down to write this blog I always wish I’d taken pictures of our day. Tonight I wished for photos of the beautiful smiles on the nurses’ faces. Or a photo of them next to Ben in his wheelchair or on one of our walks around the 7th floor hallways. But the reality is that when I’m there the thought of a photo seems like a cruel act. Why would we want to remember him this way? I know my words can’t really conjure up the vision of him in his hospital gown, tubes and cords coming off him like a telephone pole, the pale color of his face, and the messy tousle of his hair. But, alas, that’s all you’re getting for now. Maybe tomorrow he’ll be more himself and I’ll dig the camera out from the depths of my backpack.

I try not to be superstitious, but I do knock on wood and I have been known to avoid saying things like, “Looks like we took care of that ant problem” just in case intoning that sentence might just entice the hordes back. Late yesterday as I sat on Mark’s chair-bed in Ben’s room I put the finishing touches on my new blog post. I had just finished editing and was literally, I mean literally, about to touch the “publish this post” button when the critical care doctor came in. It flashed through my head that I was tempting fate by posting that all was well with Ben, that things were “drama-free.” But I went ahead anyways and touched the button, sending my post to my blog.

And literally, I mean literally, the next minute the doctor told us Ben’s right lung cavity was partially filled with air or fluid. They put an oxygen mask on him. Apparently, the pure oxygen works to absorb the excess air in the cavity. Whatever was in the cavity was taking up crucial real estate, real estate his lung needed to expand into. He’d been complaining a lot about the lung exercises and coughing was, not surprisingly, painful and scary.

The whole lung thing has freaked me out since the beginning of this adventure. I read early on that a part of the VBS surgery was deflating the lung so that the doctors could get in through the side and between the ribs to implant the staples. I read with horror about the chest tube, which I really didn’t understand, that stays in after the surgery for at least a day. And the more I found out about it (you know I researched it) the worse it sounded. I even read about another VBS patient (at another hospital) whose lung had collapsed post-surgery and that was the most frightening of all, until I saw that she was discharged only one day after the initial discharge date they’d planned for.

But still, I’d pushed the “publish this post” button. I’d jinxed us and look where it got me. Sigh.

I didn’t sleep well last night. Actually, I should say I had trouble falling asleep last night. I got back to the hotel early, only around 6:30, but I didn’t really go to sleep until close to 2 am. It was hard to get going this morning, too. I think there was a part of me that was dreading something worse coming down on us. I know better than to be smug. I know better than to count my blessings too soon.

And in spite of that Ben made progress today. He got up, first with help and then more and more on his own telling us, “No, I’m going to do it myself” in a very matter of fact way. It is so hard making a post-op patient do something as difficult and strenuous, scary and taxing as walk or rise up out of a chair. I kept telling him to trust his legs, they knew what to do. And ultimately, he did, getting up first shakily and then with intention to walk out of the PICU and down the hall. He took a walk several times today, each time going farther and faster and feeling more accomplished. By 4 pm he took a walk all the way around the 7th floor, easily 8 times as far as his first walk this morning. And that last walk was accompanied by statements like “I feel good” and “I went a lot farther this time.” On one of the walks I mentioned I’d seen a parade out my hotel window last night. It was a rag tag marching band playing New Orleans brass music on its way to a jazz club nearby. It was Fat Tuesday, don’t you know. The irony wasn’t lost on Mark who commented on our little parade…Ben in his light blue hospital gown and oxygen mask, holding on to his pole of monitors and tubes, the nurse wheeling his oxygen tank, and Mark and myself, shuffling along at Ben’s baby-step speed. On another walk I asked Ben if he’d watched the snowboard cross races the night before on the Olympics and Mark said that next time we go out for a walk we’ll have our own PICU cross, complete with four kids with IV poles shuffling along. That would be something to see!

One thing the walking does is gets all the bodily systems to wake up. After almost 72 hours without food or liquids down his throat Ben got to eat some jello tonight…his digestive system finally proving it was open for business, so to speak. And it seems like the more he walked the more he shook off the effects of the morphine and anesthesia. I don’t think I really had absorbed how much those drugs would be like a veil over his personality. When I said before you wouldn’t recognize him it was this haze of anesthesia he was under. He was without affect. Emotional flat line. However, as he worked his body more and more today you could see the signs of Ben returning: he hummed as the nurses adjusted him in his bed, he cracked a couple jokes, he had me read Calvin and Hobbes to him, and he asked to watch more interesting tv shows. He also talked to me on the phone tonight and asked me to come to the hospital as early as I could tomorrow morning.

Which means I should get to bed early tonight.

The snow fell on Philadelphia as I walked from the subway station to the hospital this morning. It was seriously cold but it invigorated me. Arriving at the PICU (pediatric intensive care unit) I found all quiet and calm. Both Mark and Ben had had a better night’s sleep than the night before. Ben was in a chair, having already had his chest tube removed. Through the day, as he rested or watched tv Mark and I sat quietly by. It was surprisingly low key, nothing like our previous experience in hospital. And, mind you, I’m not complaining. The approaching menace of the surgery is passed. We made it through with flying colors (I imagine Ben would be of a different opinion).

This is all good. I’d much rather sit quietly in Ben’s hospital room than outside the OR worrying about what’s happening. As we sit patiently allowing him to recover from the injury inflicted on him yesterday (all in the name of a straight spine) things are quiet and calm and drama-free.

At the moment (5:30 pm), Ben sleeps in his bed, hooked up to all manner of tube and machine. One tube has blood in it and I tentatively asked his nurse, Ephraim, what that was for. It’s a drainage tube coming from one of his surgical sites, keeping the fluid pressure down in that area. Or something like that. [My understanding of all things medical is limited and sometimes the information I get starts to overwhelm me. So I nod (as long as it seems like just a case of TMI—too much information) and allow it to wash over me. I tend to faint in hospitals so I monitor internally and closely my reactions to the words, sounds, and sights here. I make sure I’m not starting to feel the blood rush away from my head in a panic. Unfortunately, having had way too much time in the hospital with poor old Ben, I’m getting very good at managing this and so far…not to jinx myself or anything…so good.]

Ben has several IVs, a blood pressure cuff, and monitors for his heart, oxygen, etc. I honestly don’t know what it’s all for. I take in the quiet beeps and buzzes, watch the screens posting numbers; 90, 17, 95, 114/61, and I knit and write. Mark reads or watches the tv. Ben sleeps. Now and then someone official comes in to adjust something or take a reading. It's startlingly peaceful.

This PICU is so nice. We are cocooned in our room, large glass doors and a curtain separating us from the typical hubbub of a busy PICU. This PICU is not busy at all, however, the product of a very controlled surgical program at Shriners. The nurses are lovely, every one. And Ben has two! Haven’t met one I didn’t like. They are gentle and firm, confident but not bossy. They all are so friendly, calling a cab for me last night (that never arrived!) or urging Ben to take a deeper breath or blow out harder with his lung exercisers, chatting with me about horses and donkeys or helping him to move from bed to chair.

Slowly, my boy emerges. You would not have recognized Ben for most of the day. It wasn’t the tubes and the compression stockings or the hospital gown. It was his personality. For the most part, he’s not speaking and rarely letting out a smile. He’s turned down offers of read alouds, YouTube, and Discovery Channel in favor of silently watching Sesame Street, PBS kiddie shows, Sponge Bob, or the Olympics. These shows require less from him and must be more soothing. But as time passes things improve. Every hour there is some sign of progress, a giggle or a small smile. He had his urinary catheter removed a couple hours ago and later walked down the hall. Those are BIG deals.

It’s understandable. The pain, the morphine, a low grade fever add up to some serious malaise. We expect him to feel lousy for a few days. But the folks here still expect us to go home near the end of the week. It’s only Tuesday and that’s entirely possible.

Mark and I are doing fine, thanks for asking! (I’m not kidding…many people have mentioned the importance of caring for ourselves. We are, don’t you worry.) It helps that he’s getting terrific care. And it helps that each night I’m able to get back to a stress-free environment to sleep in. Mark has an amazing capacity to get sleep in the most challenging situations. The beeps and noise of the PICU tend not to get in the way of his zzzz’s. I imagine he’ll get still more tonight.

Now the clouds have broken and there’s an evening’s lavender sky showing through. I probably won’t stay late tonight, the trouble getting cabs is getting to me, and I enjoyed taking the subway (aren’t I the big city girl now?). We hope tomorrow will bring us a stronger, happier Ben. Keep the prayers and blessings coming.

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.

And so it begins, part II

As you know, Ben spent way too long at Children’s Hospital in Oakland four years ago. That hospital has a bustling ER, many floors full of kids in a variety of states of health, a huge cafeteria, at least two ICUs and a NICU as well. Hundreds of patients, hundreds of doctors and personnel. Hundreds of shell shocked parents. Shriners is a totally different beast. I didn’t even realize how different until this trip. It’s amazing what you don’t know if you don’t even know the questions to ask!

Shriners Philadelphia is an orthopedic-exclusive hospital. (I believe each Shriners has a specialty.) It is extremely small and does not take any ER patients. The ICU only has 5 patients at a time and each one has his/her own room. Right now, because of budget issues they’ve cut back on surgeries, but they also have active clinics, an orthotist (brace and prosthetic maker) on site, radiology, and a HUGE play room for kids. I’ll try to take some pictures, it’s a very cool space. (If you want more information about the Shriners go here.)

When we checked in here yesterday very little was going on. Few patients, not a lot of staff. They are typically quiet, making sure they don’t have anyone in the ICU on the weekends. We got the tour, signed some forms, the usual. Ben sat on his hospital bed with an eye on the TV and two hands on his iPod, his mood fairly cheerful. Mark got Chinese take out for dinner and then the nurses arrived with the “pokes.”

I need to tell you that an IV stick is not just an IV stick to Ben. Two months at Children’s ingrained in him many negative associations with hospital life. The Poke is probably the worst. He was a human pincushion by the time we left Children’s and as soon as the Pokes arrived this time, it all came a’rushin’ back. The first nurse tried with two needles to get a good vein to no avail. Ben was tense (not helpful) and anxious, cried, and nauseous by the end. She’d dug around for quite a bit and it was not pleasant. We called home so that he could talk to his brothers, and connecting with Harry (especially) calmed him down and cheered him up. When the next nurse came in (a very animated young woman who assured him she was the best around at getting IV’s in and talked Nintendo, Super Mario, horses, and getting grossed out by needle pokes with him) he was a bit more accepting of his fate. And when she was ready to do her dirty work we called Harry who valiantly stayed on the phone with his little brother through the whole ordeal. I say “ordeal” because though she was able to get it in right away (she was really good!) the drawing of the blood really hurt and he cried bitterly. Poor Harry sat on the other end in California offering up inappropriate inside jokes from one of their favorite video games, telling Ben he was there for him, and more I can’t even recall. It’s the love part of their love/hate relationship and it gives me tremendous hope for their future connections. Thank goodness for brothers!

About this time Dr. Cahill, Ben’s spine surgeon, arrived to give Ben the once over. We had a long chat with him and left the room to get the talk about risks and possible negative outcomes. I won’t bother you with the details, but suffice it to say I started to feel extremely nauseous and was wishing I’d popped one of my happy pills before we left Ben’s bedside. Intellectually we know that the chances of one of these dreadful issues arising are very slim, but we’re seriously gun-shy having seen that side of surgery when Ben was at Children’s. To say we’re all traumatized is an understatement.

Soon enough it was time for me to head back to the hotel to get some rest before returning for the surgery. (Only one parent is allowed to stay at bedside with each patient.) That’s when I realized how small and quiet an operation Shriners really is. There was no one at the front desk, the lights were turned down in the lobby, the doors were locked. Shriners was CLOSED. I went back upstairs to ask the nurses for help and we discovered that the cab companies were not accepting new fares for the rest of the night due to volume (Valentine’s Day evening) and road conditions. I got fairly desperate, we called a lot of taxi companies, finally had one say they’d send someone in an hour and I went down to the lobby to wait. I finally decided to call the hotel and after a couple calls found someone who took pity on me and arranged for a driver to come pick me up. It still took him a while to get there (the hotel is only 15 minutes from the hospital, but the streets are banked by snow and the driving conditions are not ideal) but I was finally “home” in my comfy hotel room by 10 pm. Exhausted.

And so it begins, part I

I am sitting in the parent lounge at Shriners. It’s about 9 am, I gave Ben a kiss and we sent him off to the OR about an hour ago. You might say Mark and I are troopers…being brave for our kid…but really, Ben’s the trooper.
I feel like there is so much to tell you, the moments that were standouts over the past day and a half, and yet you don’t want just a chronology of events, do you? Writing is therapy for me, though, so I may just tell you what I observed.

Ben is amazing. But I guess you knew that. (In fact, all three of my boys are. The reports I’m getting from the folks caring for Harry and Toby back in Sebastopol warm me, buoy me. They are who they are and apparently who they are is pretty beautiful. My cousin Ruth told me today to call her whenever I doubt that, and for those of you with teenagers, you know those moments do tend to pop up. But in the crunch times, it’s so good to hear they are being caring, responsible, compassionate, and real.)

But Ben is tough. He hangs in there through the dark and the light. This trip is such a double-edged sword for him. A host of contrasts. The Ritz-Carlton/the OR. Bubble baths/sponge baths. Philly cheese steaks/hospital slop. Happy, cheerful, upbeat/blue, scared, anxious. Lots of attention/major surgery. We kidded him about how hard he had to work to get some “only child” time with us. Everyone’s been asking him, “Do you have any brothers or sisters?” and when he tells them one older and one younger brother they reply: “Oh, so you’re the guy in the middle.” This place in the sibling constellation has never been easy for him. I think he hated it from the time Toby was born. Poor Toby, it wasn’t his fault. So, our middle child is the one with all the medical issues…and thus he gets Mama and Dada to himself for a while.

The past 36 hours have been full of those contrasts. The red carpet treatment at the Ritz-Carlton helped relax Ben the night before we checked into the hospital. But as soon as we tucked in for the night his anxiety levels rose. I snuggled into bed with him and asked him to tell me about his “Safe, Quiet Place,” the place I have him “go to” when he is stressed or anxious. We’ve been focusing a lot on its details of late so that we could easily go there at the hospital in the stressful or painful moments. There will be many, it’s just the nature of the beast. And we know this from experience.

His SQP is a beach house somewhere tropical with sand, blue skies, surfers, and whales splashing in the surf. A sandcastle contest and palm trees on the beach top off the exterior. Inside it’s every boy’s dream with comfy furniture, a foosball table, a pool table, every video game device known to mankind, a loft bed in the bedroom, a maid making dinner, and a butler to tend to your every need. His friends are all there for a tour and a celebration.

Telling me all about it was distracting, but also too invigorating for midnight, so I got him to quiet down, visualize his SQP in his head and he relaxed, settled down, and fell asleep pretty easily. He slept well all night, even late into the morning. I, on the other hand, had a fitful night, my SQP isn’t working for me and I instead went to my WFP (my Worried, Fearful Place). There I was distracted by images of my baby post surgery, coming out of anesthesia, the knowns and unknowns of what lies ahead.

We ventured out to the Reading Terminal Market for brunch…the greatest place to find good eats and a short walk from our hotel. It’s a real scene. Much like the Mercato Centrale di San Lorenzo in Florence, it is filled with colors and smells, sounds, and a unique hustle bustle energy. Food vendors, book sellers, Amish farmers, and chatchkie purveyors have stalls inside the old Reading Railroad Terminal Station (if you know your Monopoly you’ll recognize the name…and by the way, it’s pronounced “redding”). We had some favorites the last time we were in Philly and headed straight to them: the Thai food stall for Ben and Tommy Dimic’s sandwich counter for Mark and I. Yum is all I can say.

Returning to the hotel, meant getting one step closer to The Hospital, and his mood switched to subdued. He hopped back in the tub for another bubble bath and Mark and I packed sweats, pajama bottoms, slippers, a few of Mark’s Hawaiian shirts (because they open in the front) for Ben, some clothes for Mark and lots of technology for both of them to take to the hospital. By 2:45 pm we were in a taxi on our way there.

The royal treatment

How do you make a boy feel like a prince?

When he arrives at the door of your hotel, the Ritz-Carlton, you get VERY excited when you find out who he is.
You and EVERYone working in the lobby knows his name and makes sure to greet him with an ear to ear smile.
You say, "We've been waiting to meet you!"
You offer him treats from a wagon of silly kid stuff, and when he declines (politely) you offer him a movie, which he accepts.
You bring him a sparkling cider in a champagne flute and a glass of the bubbly (the real kind) for his mom.
You, the general manager, come out to meet him as he arrives and shake his hand telling him to let you know if there's anything he needs.
You arrange a huge room for him and his parents with three luxurious beds, a marble bath, and a pretty city view.

You know his name, no matter who you are in the hotel, you seem to have heard about him...he is practically royalty.
You are thrilled to help him find a great restaurant for dinner.
You happily hand over a packet of maps and other things specially prepared for him to help him have fun while he's here.

And you give him the opportunity to take a relaxing bubble bath the night before he checks into the hospital...

It doesn't get much better than this.

Thank you, Barbara. What an incredible treat this is.

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...