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.
Monday, February 15, 2010
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!
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.
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.
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.
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.
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