Showing posts with label surgery. Show all posts
Showing posts with label surgery. Show all posts

Wednesday, February 4, 2015

Countdown to Number Six

One week from now, Kingsley will be in surgery for the sixth time.

The big M&M.

I'm having a lot of trouble with this one. Like the tendon release surgery last year, this is elective. It's our choice. His life does not depend on this . It falls under the category of "quality of life", as in, we hope to improve Kingsley's by doing this surgery. This massive, long, complicated surgery.

Also like the last surgery, we have had a lot of time to plan this one. To sit and ruminate. To think of all the things that could happen. All of the things that could go wrong. So, I've had a headache for about a week that just quietly throbs behind my eyes. In a way, it's like when I was pregnant with him and just had to act normally while inside it was the one, single thought always in my head: the countdown.

One week.

Seven days.

Actually, less than seven. We go into the hospital on Tuesday so that Kingsley can be prepped in advance, which I hear is quite unpleasant.

I have five and a half days to finalize all of the childcare arrangements for the girls, clean my house from top to bottom, pack for him, pack for me, spend as much time with the girls as I can, and somehow get Kingsley ready for what is about to happen to him.

Kingsley knows he's having surgery, he knows what the outcome is going to be. He's not altogether impressed with the idea, but he knows that I will be with him the whole time and I will make sure that he's not in pain. He knows about the drains, though I'm sure he has no idea what that actually means. Sometimes it's hard for kids to wrap their head around these things. And adults, sometimes it's hard for adults to wrap their head around these things.

My biggest (okay, second biggest. Maybe third.) fear right now is that the surgery will be cancelled. That all of this anxiety and planning and preparation will be for nothing. I want to put Kingsley in a bubble and protect him from any germs. Then I want to fast forward to about 3 days post op and have everything healing smoothly.

Breathe....

Monday, January 13, 2014

It's A Big Deal

A couple of months ago I was out at Target with Kingsley and being unfamiliar with the store, we wound up in the underwear aisle. Kingsley, naturally, started screaming and cheering the fact that there was Thomas the Train... underwear. My heart squeezed. I turned him quickly and got out of that aisle. Fast.

Underwear is like the Holy Grail in our world. Social continence - the ability to stay clean all day long, though with non-traditional methods - is a huge quest. The very very bottom of the spinal cord is the part that controls continence, so nearly everyone living with SB has to work to achieve social continence in some form or another.

I have probably said far too much about our quest for social continence ;) It has been a battle for about a year and a half now.  I have been googling and googling and emailing and messaging and reading and consulting and trying and trying and trying again.

And then this weekend, Kingsley wore underwear all day. And all day today.

Underwear. 

All. Day. 

Kingsley. 

Do you know how long I've waited for this day? It was pretty darn exciting. 

I kind of feel a teenie bit like we are cheating on the underwear thing. While our #2 issues have been completely, totally resolved (ALLELUIA!!!), the brand new #1 issue is still there. I can't figure it out, but as the timing was exactly when we figured out #2, it must be related. So, anyway, to address that business, I got Kinger what I call men's maxi pads. They're Gentlemen's Incontinence Pads, but let's be real - they're blue and shaped like a pear instead of an infinity loop. Whatever you want to call them, they are significantly cheaper than diapers. Although, it was more awkward buying them than when I stock up on KY (which is not a wink wink thing, it's for Kingsley and I do buy about 10 tubes at a time and get a lot of averted eyes by cashiers). 

So, with one of those guys hidden in Kinger's Toy Story unders justincase, he is good to go! 

He is still going to have to wear a diaper at night for the foreseeable future until we get that stuff worked out.  He doesn't actually care what he's wearing or even notice. I mean, other than the big underpants parties we had all weekend. ;) 


However.

As thrilling as this is, it is not a permanent fix. The things we are doing now, the way we do them, Kingsley cannot be independent. It is different for every person, there are so many relevant factors - gender, leg/body functioning, age, continence issues... but we have come to the conclusion that for Kingsley to be both continent and independent, surgery is his best (and likely only) option. This has not been an easy decision, despite my previous thoughts on it. The procedure(s) we are investigating are far more invasive and scary than we first thought. The recovery will be long and unpleasant. The risk of complications are real. But, we have yet to find someone who regrets having the procedure done. The only regret we have heard is the regret that it wasn't done sooner, when they were younger. I don't know when we will be having it done, but the decision has been made. The next chapter will begin. 

Monday, November 18, 2013

Casts Off

The casts came off today.

It was a very strange day. Kingsley didn't want to take the casts off. He kind of gets set in his ways that way, once something is a certain way it has to be so. I don't think he was actually attached to them, but we did make the mistake of calling them 'Thomas blue' to match his Thomas costume and so he was very sad that he'd have to have his Thomas Casts taken off. He's very sad that Halloween is over.

His casts were cut off without any drama (though don't you have that moment of panic where you're sure that the saw is going to accidentally slice through skin??) and his surgeon came in to check on him and see how his legs had healed. She was very happy, they're straighter than even she thought they'd be able to be.

Kingsley lay there as the three of us stood over him - the man with the saw, the surgeon and I. I was watching his legs as we were chatting and suddenly I noticed something.

"He can't kick."

His surgeon tried to reassure me, he'd probably need some time to strengthen the muscles again, he'd get the strength back...

"No, I mean he couldn't kick. He can't do... that."



This whole thing came about because Kingsley has a bit of hamstring, but no quad. He can pull his legs up, but not put them back down. He bends at the knee, but not straighten. Not at all, ever. He pulls his legs up, bending his knees and unless gravity pulls them back down, they stay there, bent. 

"IT'S A CHRISTMAS MIRACLE!!" the saw guy seriously said that with a huge grin and I almost high-fived him. 

His surgeon thinks it's more likely that he was so tight he wasn't able to push back against it, but she couldn't say for sure. We will have to see what happens next. 

I made him do it over and over and over and over. We got home and I made him keep doing it. 

In. Out. In. Out. In. Out. 

I was so excited! 

You know the term 'bittersweet'? It pretty much defines SB. Right in the middle of giving King another thumbs up for kicking me I heard this bored voice in the back of my head: so what?

So what. 

Really, what does it matter? He isn't going to walk. He isn't going to stand. It's very sweet that something new and unexpected happened, that the surgery was such a success, but nothing really changed, that's the bitter truth. 

Wahn, wahn, wahn....

I am very thankful that the surgery was such a success. I'm trying to see this new little movement as a sign that he really did need the surgery to happen. As a parent, entering the world of 'elective surgeries' is a very scary place to be. Potentially putting Kingsley through a surgery that ended up being useless somehow making things worse would be dreadful. That didn't happen, so huge sigh of relief there. 

Before and After: the top is before, which should be obvious. This is as straight as his legs would be when he lay on his tummy. His feet are upside down, sorry, but you can still see how pronounced his 'ballerina foot' was compared to now when it's just a foot. 

Tomorrow, we see his orthotist and he will be fitted for new AFO's and we will talk about RGO's. Kingsley has loved being able to be lifted into standing at any time with his full leg casts/splints on the last 5 weeks. He has finally expressed an interest in standing and walking, which has never happened before. This is perfectly timed with new gear that will get him more independently upright than his stander. He will need a lot of motivation to use RGO's and he seems to have it. Fingers crossed for our next adventure.  


Sunday, October 20, 2013

Recovery

Kingsley's recovery from his tendon lengthening has been so interesting to watch. It fascinates me especially since I had my own ortho surgery last spring. To say that our recoveries are night and day would be an understatement - he puts me to shame.


Kinger was discharged Wednesday, the day after surgery. They were able to modify his own wheelchair with a foam covered board to rest his legs on. His casts make it difficult for him to sit back all the way in his chair, so he ends up being slightly reclined all on his own, like they wanted him to be. Huge relief.


He also fit in his own carseat! All of these things I was worried about and so far both are just fine.


And, he can (just barely) fit in his stander!


As for how he is doing, he is amazing. They gave him Tylenol and Advil in the hospital, but I haven't given him anything since we got home. He hasn't shown a moment of discomfort or complaint. He was tired the first two days, going to bed early and sleeping solidly, but that's it.  He can commando crawl, dragging those beastly things along behind him and he can even roll himself over both ways still, it's quite amazing to watch. He's also figured out how to sit on his own. I realize these things seem like mundane feats for a 3.5 year-old, but considering he cannot feel anything from about his waist down, he has to work out balancing without feeling what he's balancing on and now his two biggest props (his legs) are bound in a completely different position than he's used to. So... amazing, yep.


Tomorrow, he has these casts removed and new ones put on. I'm not sure if he'll be wearing these zimmer splints the whole recovery or not. Right now, he kind of reminds me of a hockey goalie. How very Canadian ;)



Tuesday, October 15, 2013

Surgery Number Five

It happened. We survived.

As you can imagine, I hardly slept last night. Add to that the alarm clock set for 4:30am and you can imagine how much caffeine was required to get through the day. I was so consumed with all of the dreadful thoughts you just are not supposed to think about when facing a situation like today. 

The prep we had done with Kingsley this past week and the hospital tour made such a difference for him! He was calm, he understood what was happening, he completely let it all happen. 


When it was time to take him back, he was calm. He explored the OR a bit and then easily let the Dr put the mask on his face. I talked to him, held his hands and without the slightest quivering lip, he drifted off to sleep. So brave, so very brave. 

Surgery took only about 90 minutes. His surgeon was very pleased with how much she was able to stretch his hamstrings. She had ended up doing both ankles once she had a good look at them in the OR. This actually works out in his favour because with both feet evenly casted he can bear weight go in his stander! She also only saw the need to cast him from the knee down and then wrapped zimmer splints over his whole legs. 

He woke up in recovery like a true champ. Not a tear, barely a cry until he saw me and wanted hugs. 


He was a little groggy. We sat him up and showed him his legs. His response was that he would like us to take off those new shoes please, he didn't want them on. 


He then turned his head to me and in his raspy-newly-extubated voice said: "Mommy, I wuv you. You're my best fwend." Aw!! Who cares if he was a little stoned, it was the highlight of my day. ;) 

It took them nearly 3 hours to get us a bed on the kids floor, so we just hung out in recovery for a long, long time. He did great. He ate Popsicles, played on his iPod and snuggled. 

This afternoon, he acted as though nothing at all had happened. The personal TV in his room was a little bit of heaven for him, so the TV coma definitely helped to keep him happy. He also wooed his nurses into showering him with juice, cheese, and pizza. It's tough work being so darn cute. 


His legs are completely hidden from me. The incisions are small and better left alone to heal, so we are not to touch his splints at all. Next Monday his surgeon will take them off and recast him into lighter, straighter casts. For now, they weigh a ton and are about as wide around as my thigh. Craziness. 


Tomorrow, we should be seeing someone about a wheelchair and a means of driving him home. Then we will be discharged, so long as nothing happens tonight. For now, I'm just thankful that part is over. Time to recover. 

Friday, October 11, 2013

Counting Down

I love count downs. Count downs to holidays. Count downs to Christmas. Count downs on the radio. Turns out, though, I hate count downs to surgery.

Kingsley's surgeries so far have been like this:

#1, back repair
Doctor: Congratulations, it's a son. I'm going to prep him for surgery now.

#2, shunt
Doctor: Remember that shunt I said he'll likely need? He needs it. I'm going to prep him for surgery now.

#3, decompression
Nurse: the doctor just looked at the images. He needs surgery. You've got less than a week to get things organized.

#4, detethering
Nurse: the doctor just looked at the images. He  needs surgery. You've got less than a week to get things organized.

#5, tendon release
Doctor: when do you want it? Five months? OK, see you in October.

Five months is far too long to sit around thinking about the worst things that could happen and all the ways that this could go badly. The last month has been the worst. Between Kingsley's endless stream of doctors appointments regarding his bowel fun, there has been the consult for surgery, pre-admit appointments, a urodynamics (which he did like a boss), OT appointments, PT appointments, SLP consults, preschool discussions, and finally, a tour of the hospital to desensitize Kingsley to what was going to be happening. It's been a lot to take in and I'm just drained from it all. Spina bifida's impact on our lives ebbs and flows, and lately it's flowing over my head.


I think the hardest part of all of this has been not knowing what will happen after the surgery. Word on the street is that it could go one extreme way or the other: either he will carry on as normal, but with casts or our lives will go into a dead stop for 4-6 weeks while he has the casts on. His PT does not think we will be able to modify his wheelchair to accommodate casts and so will have to use a loaner from the centre which I haven't seen, but has been described as a beastly thing. If he can't get around in the wheelchair, can't crawl, can't sit unsupported, and can't go in his stander, the poor kid will be immobile. We have requested a scooter board be made for him, but it's not ready yet. Another huge issue is how he's going to fit in a carseat and where his legs will go while he's in one. It's another thing we won't be able to work out until he has the casts on him. And of course, how heavy are these casts going to be??  Even if I get him in a carseat, will this modified wheelchair fit in our van without breaking my back?

I am looking forward to this being over. Not only because I'm beginning to dread the casts, but because I'm excited for when the casts are off and he is able to do more. I can barely get his AFO on his one foot now and hate putting him in his stander because I can't get his legs straight enough and I'm constantly worrying if I'm doing more harm than good.

And so, we count down the last few free days before surgery. It's a nice long 4-day weekend that we have to visit with family and just hang out. Tomorrow, we are going to a wedding, Sunday is Thanksgiving, and Monday we will spend just enjoying our time together. Tuesday at 8am, his surgery begins. Counting down...

Thursday, October 10, 2013

... And Then My Head Exploded

I wasn't exaggerating when I said our lives revolve around poop these days. It still does. Since meeting with the general surgeon a couple of weeks ago, I have also met with the GI again, Kingsley's paediatrician, and today King's urologist. It's been great, and by 'great' I really mean mind-bogglingly ridiculous. 

Here is a breakdown of what we are discussing:

GI: do a cecostomy and do it now. Stop messing around and cut to the end where this happens either way. No MACE, MACE is bad. Maybe a mitrofanoff. 

Surgeon: no cecostomy, there are too many risks. MACE would be better, but try enemas for now. 

GI: what?? The risks are minor. Don't do enemas, that's a waste. Try senna for now [sidebar: worst advice ever. That was an ugly, ugly week]. 

Paediatrician: Cripes. I can send you for a third opinion, where would you like to go, who do you want to see? Are things better in Toronto? [another sidebar: is there anything better than a dr that admits this isn't their specialty and refers to experts whenever you ask? No. There isn't <3]

Urologist: cecostomy? Never. He needs a MACE and I will do it. And maybe the mitrofanoff, we will see, but likely [insert awkward moment of him trying to explain why, LOL!!] And yes, do the enemas now. But get a MACE soon. 

Which is about the time my head exploded. What do we do? Whose opinion do we trust? I have no idea. At this point, we are going to hang out with PEG until after the casts (that he gets Tuesday) come off. Then we will try enemas. Then we will start talking about a timeline for the MACE and investigate the mitro further. There is some security in knowing that this is somewhat status quo in the SB world. 

Good grief. Kind of makes me want to punch myself for ever whining about potty training Rach and Cor. If only a sticker chart and Strawberry Shortcake underpants could solve these problems! 


(not that you shouldn't whine about how awful potty training typical kids is. It really is horrid. Worst 2 months ever. Kind of. Well, whatever, it sucks, I remember.) 

Thursday, August 22, 2013

Autumn is Coming...

Autumn sucks for Kingsley. 


We discovered the syrinxes in autumn 2010 (and had a bunch of surgeries).



This year, I figured I'd flash the bird at Autumn and beat it at it's own game: I planned a surgery for Kinger. So there! We already know that autumn is going to suck and we know why. I was all: IN YOUR FACE! right up until I hung up the phone on Tuesday with a surgery date and pre-op appointment scheduled. Then I felt like throwing up. 

His hamstring and heel-cord releases (are these even the real surgery names? I may be making them up) are scheduled for October 15. King and I will be meeting with the ortho surgeon two weeks before that to finalize the details. His PT wants her to consider doing some work on his ballerina foot as well to get it less ballerina-pointy and more flat footed. Either way, he'll be in double leg casts for four to six weeks afterward. 

I haven't really figured out how I'm going to tell Kingsley all of this. Right now, I discuss it in front of him, but not with him. He doesn't quite grasp the concept of time and thinks that anything I mention in the future is imminent - for example, thanks to Costco having Christmas wrap out already, Kingsley thinks Santa is coming any day. I don't want him to live in a state of constant panic at the thought that any car ride is going to end at the hospital with him having surgery. It's very different from the last four times when he was an infant. On the other hand, I do need to talk to him about it eventually. It would be rather cruel to take an unsuspecting child into the hospital and have him wake up in double leg casts. SURPRISE! 

One other itty-bitty thing causing me a bit of anxiety is that he has an MRI booked for next Tuesday. It's supposed to be just a routine see-how-things-are kind of MRI. Pleasepleaseplease pretty please with a cherry on top, can this just be a routine MRI and not some fake-out where we discover something we don't want to discover??  I did tell King about the MRI next week and the mask that is going to help him fall asleep. He was not pleased. Apparently, he remembers the Mask of Doom from last year and freaked out a bit when we were talking about it. Eek, poor guy. :/

we had the pre-admit appointment today. I think he handled it pretty well.


Monday, June 3, 2013

Surgery #6 ...and Maybe #7

Holy crap, right? He hasn't even had his 5th surgery (the hamstring/Achilles/foot release in the fall) and already we are planning more. It's like booking a years worth of vacations, only a lot less fun. But it's free, LOL! 

We have a whole lot to think about, but the ball is starting to roll on a surgery called a cecostomy. This is where you might have to Google while I convince myself that by not explaining it, I'm respecting his privacy. ;) It's going to resolve all of the poop woes. We hope. 

This is where my head feels like it might explode. I feel like for the last few months I've been throwing my hands up saying that if a c-tube is inevitable, then let's cut to the chase and just do it. Now, his specialist was like, 'it's inevitable, let's do this!' And I'm balking. 

Here is where my head is at:
Is it really inevitable? Really really? How really really? Is the alternative constantly monitoring and ruminating about nothing else? Because I'm not down with that. 

I can't find a downside, risk-wise. I think things will need to be changed out, it's a surgery, so the usual complications would be at play. But he's young, he heals well, and at this age, he will barely remember. 

It feels like a big decision to be making FOR him, but his GI described it like getting his ears pierced - you can always take out the earring and let the hole grow back in. 

Doing it this young (I think I'd aim for next winter after he's done with the ortho fun) was unexpected, but I'm all for skipping more med experiments, enemas and anything else that may cause damage and frustration, only to end up here in a few years, exhausted. 

While we were there, he also tossed out the idea of doing a mitrofanoff (Google) at the same time. THAT was not even on my radar. Jeff is all for it and I am not so sure. At first, I was an immediate NO! Because we don't have uro issues, he's all good and managed, so let's not fix what's not broken. I may come around though. There are some pro's to that as well. 


He will have just turned 4 when/if we do this. He will have 8 months to adjust to this before he starts school. Doing it then will also mean I will still be at home with him, since I'm going to have to find myself a job or something when all three kids are in school ;) 

I'm a little bit freaked out right now. I'm trying to remind myself that this isn't really making him more atypical since the way we deal with these things now is not at all typical, it's just different. Different is scary. Scars were once scary. Shunts were scary. AFO's, wheelchairs, catheters, drugs with long names- all scary once upon a time. This will be a piece of cake. One day. 

If anyone has any experience with these, any good stories or glaring reasons why we should stop all contemplation, then please, let me know. 

Wednesday, April 3, 2013

Taking One For The Team

Last year, my friends convinced me to join a women's rec soccer team. I had started running after King was born and they assured me that to play soccer, I just needed to know how to run. Turns out, that's kind of like saying that to play football, you just need to know how to squat. I was tackled (while running) in our 6th game and the snap of my ACL tearing off my tibia was so loud it echoed in my head for days after.

So, last Wednesday (we delayed it until after the move) I had my ACL reconstruction surgery. It went fine, from the surgeons perspective, all routine. It was my third surgery - the first was an oral surgery when I was 12 that makes for a great gross-out party story, the second was my c/s when King was born.

I know when Kingsley was born I had heard about women who bounce back and are great, but I was not that woman. My wee babe had surgery on his back and then his brain and the boy was off drugs weeks before I was, acting like it was some foggy memory while I whined and moaned for nearly 9 months. Same with his next two surgeries.

This kid is a superhero or something. I'm not sure where these genes came from or why I don't have any.

I am one week post op on my little knee surgery and I'm still popping pills around the clock, hobbling on crutches, sweating and swearing through PT, and my leg is swollen and bruised every shade from black to yellow from my mid-thigh to toes. Thank God for my parents and mother-in-law or Rachel would have had to be in charge because I'm useless.

I honestly have no idea how Kingsley makes surgery look so easy.

On a silver-lining note though, I can tell you that this house is truly accessibly awesome. I haven't had to go up or down a stair or face any obstacle in the past week, other than the girls bedroom. ;) The elevator rocks my socks and the wide halls and doors are totally appreciated. I can even see why drawers are so much better than cupboards.

In a week or two, I will be off crutches and within the month I'll be allowed to drive again if all goes well. In the meantime, I will endure Kingsley making grossed out faces when I take off my wrap and brace, telling me he doesn't want to see Mommy's owie and to put my 'ups-ups' (his name for his knee-immobilizer braces) back on. I think he secretly thinks I'm a wimp.

Thursday, March 14, 2013

R.G.No.

In the midst of our crazy move and unpacking frenzy, we had an appointment to have Kingsley casted for his RGO's. RGO's are Reciprocating Gait Orthosis. They are basically braces up to his waist/torso with a spring action so that when he leans back the right way his foot will kick out. Lean the other way, the other foot kicks out. It simulates walking for someone who cannot walk themselves.

They receive mixed reviews in the SB world. Older generations remember them as torture devices, but current parents of younger kids like them. From talking to some PT's about the way things used to be, there used to be more of an attitude of 'walking at all costs', which I don't feel like there is anymore. Wheelchairs weren't even mentioned until kids were 3yo and all walking options had been addressed. Jeff and I know that RGO's are not going to be a functional means of walking for King. We have realistic expectations of this being an exercise for him, another way for him to be up and doing something. I don't plan on taking him out around the town or walk to school or anything.

My reason for wanting Kingsley to have RGO's is that I see a future for him in which there will be some way for him to be upright, functionally, if he wants to be. I don't know what it will be or what it will entail, but technology is progressing so quickly that things like Segway's and Exoskeleton's are only going to open doors. I want him to be confident being upright and for his body to know what it feels like to move this way. I want to provide these opportunities for him now, just so that nothing is closed to him later.

Which brings me to his casting appointment.

We had our initial appointment with the orthotist a few months ago to discuss it and get the paperwork started. Sidebar - these fun little braces will cost over $12 000. For real. Fortunately, we have a program here called ADP that covers 75% of the majority of equipment we will need for Kingsley, but do the math and *choke*, these are no joke.  There was very little chance that ADP wouldn't cover them, we weren't worried about that, but they were a little slow on their approvals lately, so we just let them take a few months to sign back the form while we dealt with house stuff. Now, the approval was in, we were set.

Unfortunately, the orthotist gave us some bad news. Kingsley's legs are too tight. He can't straighten his knees and his hips are getting tight now also. Kinger has some unique functioning of his legs that doesn't always work in his favour. One is that he can flex his hips and bend in his knees a bit. This tucking action allows him to lift his feet a couple inches up off the floor when he's seated on a chair (use your abs and hips only to do this, that's what he has). It allows him to also tuck and get into an all-fours position. He can't, though, squeeze his knees in to close his legs, nor does he have any quad at all, so when his legs tuck in, he can't push them back out, they either fall down naturally or they stay. Mostly, they stay. He sits crossed legged, he sleeps frog legged on his stomach, he kneels all splayed out. He's only ever stretched out when he's in his stander and even being in that 1-3 hours a day is just preventing him from getting tighter, not loosening him at all.

What this means is that Surgery #5 is coming up. They will have to release his tendons, both legs and his ballerina foot/ankle, followed by casting for 6 weeks. Yikes. This will allow him to have straight legs again and a foot that more easily gets to 90 degrees. It's not a surprise, we knew at some point this would have to be done.

It is important that we do this surgery first, even though technically they could accommodate all of tightness in his RGO's. Accommodating may make them harder for him to use them and for all of the reasons mentioned above, we really want this to be something that Kingsley does not hate or resent. We will be heading back to ortho in a couple months and see what she thinks, start to plan. I'm hoping to wait until the fall. I have my own ortho surgery in two weeks (eeek!!!) and it'll be a couple months before I'm back to normal, followed by summer with a brand new pool - hello! Can you imagine how horrid that would be for poor King?? Six weeks in casts will be hard enough.

This surgery doesn't scare me that much. Surgery is surgery, so it doesn't thrill me or anything, but surgery on his legs seems so much less intense than, you know, brain surgery. One day at a time.
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