This intimate portrayal of medical resilience highlights the life-changing power of modern surgery while raising important questions about the ethics of sharing a child's private health journey online.
Deep Dive
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Deep Dive
PEARL'S LIFE ALTERING SPINAL SURGERYAdded:
Hello.
>> What you doing?
>> Are you filming?
>> Mhm.
>> Okay.
Okay, everybody. Welcome back to a day with the Norps. Today, we're not thrifting or painting something or baking or cooking something. We're going to the doctor with that beautiful girl.
In fact, I got an email this morning and I've gotten multiple messages like this wondering um what's up with Pearl and why hasn't she gone on her senior trip yet? So, Pearl uh was born with a spinal deformity. We've known about this all along. When we brought her home from China, we took her to a bunch of specialists who ultimately said, "Let's just leave it alone. It's working just fine. She has all of her abilities to do everything that she needs to do, so we won't touch it." But um last fall we started to notice or we realized that she was losing some of her strength.
Would you say that strength?
>> Yeah.
>> Yeah. And so I was like, wait, at first it was like, hey, you need to exercise more to take care of your body. But then we realized as Ty went on like, no, like this is outside of that. she's just losing some of her strength and um sensation in her leg. And so um we went and saw a doctor who referred us to get some testing and some specialists, >> some imaging, >> some imaging, sorry, not testing, imaging. And today we're going to see a neurosurgeon because we don't we don't actually know what all the imaging is leading us to. we can guess that there might be a procedure that she might need to figure out what's going on um with her spine. So, part of what we've been waiting for was um so many places that we would like to go with Pearl on her senior trip and where Pearl would like to go would require a lot of walking. And so, we wanted to get this figured out so that it wasn't an issue while she was traveling. And she's still at home. Um, Daniel didn't go till he was 20 just because of COVID. So, it's not like she loses if she doesn't go by a certain age. We just wanted her to we wanted to figure it out and if it wasn't going to get any better, then that's fine and we just make it work on a trip. But, if there was something we can do so that she had more mobility, we wanted to do that. So, her she's still going to have her senior trip anyway. So, we're going to go to the doctor. Is there anything I didn't say, Pearl?
>> No, I think that's it. I can think of name right now.
>> Yeah. So, I mean, Pearl works and has friends and goes out and does a bunch of stuff, but there is something going on and we need to figure it out.
>> Okay. Pearl's on the >> on the paper.
>> And they asked her like, "Anything thing been troubling you lately?" She's like, "Nope, doing great." I'm like, "Well, >> why are we here?"
>> She was giving all the polite answers, which was funny. But now we're just doing the weight. We're used to this. We did this all last year, huh? With my cancer.
>> Back home again.
>> Okay, appointment done.
Um, Pearl's doctor is really cute. He looks like a young Bradley Cooper.
>> You can't say that cuz he might actually watch his video.
>> You're a very handsome young man.
>> My goodness.
>> Um, you said it, too.
>> Oh, I I agree. It just >> Anyway, so um we got a lot I was like literally praying that the doctor we saw today would be >> I don't know like >> nice >> nice and like concerned the right amount.
>> He spent a lot of time with us too.
>> He spent like an hour with us >> going over all of her imaging talking about all the options and all of the things. He did a really great job and um so we're going to have more imaging done uh CT scans. He's going to pull in all of our other records. Then he's gonna make a plan. And so we're very happy, right?
>> Yeah. I think he looked younger than we expect. I literally was expecting like an old white-haired man to come in and then this like dashing young doctor comes in.
So anyways, it was um very informative because when she had her first imaging done after like when she was like what you were like seven.
Um we didn't get it was like just a lot of information and they didn't like really explain it to us. So he sat down today with all of us and like went through everything that you know that's going on and like everything.
>> Yeah. which was really nice because you kind of realized as the years passed, people will ask questions or Pearl would ask a question. I'm like, you know what?
I don't know the answer to that. So, we got all the answers today.
>> Yeah. So, that was great. So, now we're just going to head on home. We've been here a long time. Okay. It has been probably a couple of months since that recording of that video um there at Pearl's doctor and we spent that couple of months getting tests done and getting insurance to approve more tests. But here we are. We uh Mike and I are here at the hospital. Uh we got here at 5:00 in the morning today with Pearl and um got her all situated and prepped for surgery and her surgery started about almost 2 hours ago now. She's been back there forever. It's almost noon, but it's pretty involved. They are working on deteathering her spinal nerves from like she has this like tissue fatty tissue a lipoma from from the uterus where it stuck on there which is fine but she also has kyphosis which is like scoliosis but instead of twisting to the side it's twisting forward and as she's twisted forward she's pulling on those nerves from her spine and that is why she's been losing feeling in her leg very very slowly over the last little while. All that to say, they are going to remove some of those nerves so they're not stuck anymore. They're going to remove as much of that lipoma as they can, which is interesting. They will be sewing a patch over that area cuz the lipoma has been almost like a patch for her spinal fluid. And then if they can, if everything's responding well, they will, her doctor will put in some screws and rods to straighten out the kyphosis a little bit more so that her nerves aren't pulled so tight.
That is a very involved surgery. Um he's got 6 hours booked out. He's got this big team of people that we met this morning. He's not sure, you know, obviously right now he knows, but he didn't know at that point what the situation was, what, you know, what he could do and couldn't do. We've been praying that this would all go well. We feel a lot of peace about that and that um Pearl's in good hands and that this will all be a good thing for her. Pearl was very calm. She's very good at being chill and being logical. But like at the very end, I I'll have to ask her afterwards, but it seemed like when they're about to wheel her away, that's when you get a little bit less confident. And as did I. It's like, "Oh, okay." She's like, "Okay, say time to say goodbye, Mom." I'm like, "Oh, okay."
And like that was a little bit like So Mike's here. We just we just been hanging out, you know, and we have many more hours of hanging out. And then pain's going to be a big component of Pearl's week. Um, she's going to stay in the hospital until they can get her pain manageable outside of an IV cuz they'll manage her pain right away, but it will be through an IV. We can't leave the hospital until we can manage her pain with like the same medications she could take at home. So, that might be about a week. So Andrew just made today like a Google calendar for like everybody coming to visit her so that we can make sure and keep her company and cheer her up while she's here. And everybody's been very friendly here and warm and all the nurses once again. And um we've been very happy with that. But we're just we're getting text messages from a nurse in there. She she's sending updates. I mean they're very basic like just like okay your pearl's now in the operating room and like okay the operation has officially begun and like operation is going well and that you know it seems to be at about 10 minutes I'll probably get another update but it's probably like the procedure is you know proceeding or something I don't know so anyways it's hard um but um also should be a really good thing for Pearl and um in in longevity and her abilities um her ability to keep her abilities um long term. So anyways, I'm in the stairwell now because you know there's not really any private places in the hospital, but I will keep you updated with um how it goes. Um the waiting room is now the Mike and Megan waiting room cuz there's nobody else here. Not even Not even the receptionists have gone home. It's >> 9:00. So that means she has been in surgery for let's see she's she started her surgery at 10. So 11 hours. Is that right?
I can't remember. She was in pre-op for so long. I I can't remember.
But we're very tired because we're still jetlagged from coming home from Peter's trip. So, we got up, you know, I went to bed at 8:30 last night and got up at 4 this morning.
Anyways, um I don't know if we'll get we'll get even a short glimpse of Pearl this evening. We've been in communication with the O nurse and she said that um they weren't she when she called me an hour ago she said they weren't even close to being done but um that when she was done she would go into the ICU probably overnight because when you've been in surgery that long they want to make sure you're getting like as you they'll probably this is part of what they'll do Mike because she's they'll probably um >> leave her breathing tube in longer >> as she comes out and stuff like before and anyways I'm so tired I can't remember anymore but so she'll be in the ICU recovery room because then she go what attention I'm just like you know in a room with her vitals being checked every once in a while this morning the anesthesiologist told me that might happen and he said you won't be able to visit her when she's in that room. So, um I don't know if they'll like let us see her really quick like but she won't be awake.
Um I I think either the doctor will meet with us or he'll call us when he's done.
>> He expected to be done in the afternoon.
So obviously it's very complicated which I guess we shouldn't be surprised by because no one in the history of recorded the recorded world has had a back like pearls.
So there's no protocol. There's just the you know they they 3D like mapped it.
They did all the imaging they could all the tests. Good evening. Various types of ice cream treats are being served in overflow dining room on the second floor from 9 to 11 p.m.
>> What? Ice cream >> in the overflow. I think it's for like the staff. I don't know. It's for us.
>> No.
>> Wait. Ice cream.
>> Well, I thought you would be excited.
>> Yeah, I would.
>> Um, so I remember when I was saying, oh, so they they thought, well, here's our plan, but when we get in there, it could look very different. And apparently it did or not very different but like you know you don't know till you know and and I've been like putting in the what I'm getting the information I'm getting to chat GBT and it's like walking me through what they would probably be doing and why it would take that long and why it's okay.
So um there's terrible TV on all the TVs in here. We wish we could turn them off.
Mike has tried but they are not turning off.
>> Going to rip them off the wall.
>> Yeah. Um, and then the kids are at home, you know, waiting and praying and anxious for more details as well.
Anyways, that's all for now.
>> Okay, this is where future mic editing Mike is jumping into the story because at this point, our documenting sort of fell apart because it was sort of stressful in the moment. And when that's happening, you don't really feel like holding up the camera and talking to it when it's super late or super early, depending on how you look at it. But um they finally finished the surgery. I think it was like 1 or 1:30 in the morning. Ended up being 14 hours of surgery. The doctor, it went well and they were able to make some progress, but there were a couple complications during the surgery, which is partially why it took so long. Um I don't want to get into all that, but essentially she was losing feeling in her legs at certain points in the surgery. They have a little sensors that they kind of track that sort of thing. And when that starts to starts to happen, um, makes the doctor kind of nervous cuz you're dealing with the spine and, you know, if we're losing feeling in the legs, that means maybe something's wrong. So, they essentially kind of stopped what they were doing and then just kind of finished up what they were doing, but didn't get to complete everything. So, she got out of there, went straight to the ICU. We were able to see be with her in the ICU for a few days. And then after 3 days, the doctor came back and said, "We really need to get in and finish what we started." And it's best to do it while she's still not healed all the way. And you know, we can still get in there and take care of that without kind of going through the whole process all over again cuz she's already here. She's all hooked up as far as IVs go. So after 3 days, they wheeled her back into the surgery, the O. And what we thought was going to be another, you know, 4 to 5 hour surgery ended up being 12 hours. We essentially spent the night in Pearl's room waiting for them to finish. Uh they finally finished up and then began her real road to recovery.
So, um another thing we realized that I think what we what we thought we were talking to the camera before the surgery, we thought that Pearl would essentially be able to get out of the hospital as soon as they were able to manage her pain, you know, with um medications she could essentially take orally. But it was more than pain management that needed to really happen.
she really because they were dealing with her spine will need to kind of learn how to walk again and and do things um because when you mess with the spine it messes with all sorts of stuff.
So um that meant that her recovery got a lot longer than what we originally thought and it meant she was in the ICU longer and then eventually she got over to the regular hospital part of the hospital. Um, and then after that it was like, "Okay, now we got to wait to get her over to the um, rehab part of the hospital." So, it all just took and is still taking way longer than we thought.
So, I think that'll get this all caught up. So, we'll get to that point in the story and we'll be able to kind of keep it going.
>> Hello.
>> What you doing?
>> Are you filming?
>> Mhm.
>> I was reading this book.
>> Okay. Just eating lunch with Pearl.
trying to get her to actually eat. Your stomach has shrunk a bunch though, huh?
After 15 days in the hospital, it's hard to eat. But they the food's, you know, it's it's better than um a lot of restaurants. It's not gross. She had like a yummy pasta.
>> I did have >> You said that all was left was the mushrooms. You lied.
>> I can't see that that far. So, she's trying to stay hydrated and just get better. Okay, I am headed home now. It's 2:00. This way, I can go home.
I can get dinner pulled together and then after dinner this evening, often one of her siblings is visiting. I don't know who if that's happening tonight, but I will go back with Mike at bedtime.
So, I'll take you along for that, too.
>> All right, we're here in the room.
Pearl's getting ready for bed.
I'm glad they've got large socks for her.
>> Yes, >> those are awesome socks.
>> Gold socks.
>> I need them.
>> We've been putting or I've been putting frankincense on the bottom of her feet just cuz it's a good >> for her immune system, but it's also good for inflammation and and >> all the good stuff.
>> Do you have ticklish feet?
>> No.
>> No ticklish feet for Pearl. Wow.
Probably a good thing, too.
>> Lucky you.
>> She looks beautiful. She's feeling great because they're finally letting her have ibuprofen.
>> And Esther did her hair.
>> Yep. Floss her teeth for the first time in a couple weeks.
>> Wow.
>> Was it productive >> flossing?
>> Mhm.
>> Yes. It was so satisfying.
>> Okay, that's good.
>> That means it was disgusting.
>> That means it was gross.
>> Yeah. The more That means >> Yes. the more satisfying it is. But then that means there was so much stuff.
>> There was stuff.
>> Okay. So, going to get Pearl all situated here. Have you showed the room?
>> No.
>> Have you not been in here yet with the camera?
>> Um, I just showed it a little bit earlier because we were trying to get things figured out, so we didn't we didn't film.
>> This is the room.
Not bad. Could be worse. Harry Potter's on.
>> Lights are out.
>> Turn it off.
Are you?
>> Mom's going to force her to go to bed.
She's like, I'm putting this down. You don't have a choice.
>> This bed has seen better days. It always freezes.
>> The bed struggles.
Just got to stop >> bed, I guess.
>> Yeah, I think it's Yes, it's her girth, >> right?
>> Hold on. Give me a sec. Give me a sec.
>> All right. So then we just have a prayer with Pearl and we say good night and then she pulls out her phone and like calls all her friends, >> right? And then she doesn't go to bed, but that's okay. She's an adult.
>> No, I go to bed and and she want to go to bed.
>> Okay, good. Yeah, you had a long day.
>> Okay, >> the time has come. Pearl is getting transferred over to the >> rehab.
>> Rehab place.
>> She's going into rehab.
>> Going into rehab. Pearl can officially say she's been in rehab after this.
>> We really pushed. We had an intervention and decided not like that's a joke, but you're going to rehab.
>> Yeah, >> we haven't discussed this on anything anywhere, but >> newsletter I did.
>> Okay. But Pearl's next move is to start to learn more about how walking works.
>> Body.
>> Yeah. Learn about your body and how to use it. So, >> I know. Yeah, >> that's going to happen in like an inpatient rehab. So, >> yeah, >> it'll be good.
>> It's a physical therapy hospital.
>> Physical therapy hospital.
>> She'll be there for a couple weeks.
>> Okay.
>> Which mean hospital speak that means eight months. Yeah, that's what we've learned. Quadruple any time they tell you. Uh, ever. So, >> they were gonna be here at noon. So, >> they were supposed to be here at noon.
It is now.
>> But we've got 3:30.
>> You're doing great.
>> Good job.
>> Nice.
>> Look at you go.
>> Going up a little. A whole bunch of seat belts on this arm.
>> There she is.
>> All right.
Wow.
>> Bye.
>> Exciting. This is exciting.
>> I mean, for us, it's usually not exciting to be in an ambulance, but >> Yeah. But this is >> it smells It smells like amazing nature outside. Just right. Just kidding.
Smells like new house.
>> Nice.
>> Whoa.
>> And also, if you're interested in construction, you have got a bird's eye view of this project.
>> Whoa.
>> Okay, it's now the next day. Look at Pearl.
>> She can move around.
>> She's moving around. She's in this new room. Let's get a tour of the room. You can even lean back the doors behind that wheels in the back.
>> But look, got this big windows.
>> I can go.
>> Got a big TV. Got room for clothes over here.
>> Little closet area.
>> This doesn't feel like it's really on.
>> Not a great view, but there is actual light coming in from the outside, which is nice.
>> Yeah, a lot of help.
>> Nice bed. Just way more space and a really nice bathroom in there.
So total upgrade for Pearl.
>> I just don't think >> and they're actually getting her moved around. They're >> since we're in the rehab unit, they know what to do. So it's it's really nice.
>> Great. So much better. Feels like the last place was trying to do as little as possible for Pearl. And this place is doing like their whole goal is to help Pearl.
>> It's like you think that it would be like that. The ICU was like that, but now it's like their whole goal is to help Pearl return >> to health, >> right?
Okay. So, she's been up and about and she's dressed in regular clothes >> and I took a shower.
>> She took a shower and everything. You look great.
>> Your hair looks really good.
>> Well, I didn't wash my hair yet.
>> Okay. So, we're going to we're going to go and walk around just a little bit out here.
>> I can go out. Can I?
>> Of course you can go out.
>> They don't they're not locked in here.
>> Here, I'll push.
>> Push her real fast. Megan, run.
Look at this. They've got like a whole like hangout area here.
>> Swiss Miss.
>> You did? I was like, "Wait, what?"
>> More windows.
>> So, that's super nice.
>> They have games over here. They got puzzles.
>> Oh, by the way, tomorrow going down a little cafe down here. It's very nice.
Look at these windows.
Sweet.
Okay. Outside for the first time in a while.
>> This is 17 days since you've been outside.
>> Yeah.
>> Other than yesterday when we kind of moved her.
>> That's true.
>> Yeah, man. It's nice.
>> Okay, it's the next day. We're back over here with Pearl.
>> Pearl's hanging out in her wheelchair and she's going to stand up for us.
Gonna see how how she looks.
>> There's speculation that Pearl's taller than she was.
>> That's not >> We got this crowd here.
>> You go stand next to Pearl.
>> Wait, I think >> Oh, >> here. Let me look. Let me look.
>> I feel like I'm shorter, but >> No, you're taller.
>> No, you're taller. I'm going to take >> Yeah, you're taller.
>> You want to hold hands, too?
>> Down.
>> There you go. You're definitely taller.
>> All right, my turn.
>> Can you see it, Dad? Also, that she's just standing up more straight.
>> Yeah, I think so, for sure. Yeah.
>> Crazy. Well, dude, you've grown so much.
>> You grew three inches since last week, so I'm sorry.
>> I think looks pretty good.
>> Look at her standing up.
>> Whoa.
>> Cool.
>> I have to find a photo of like you and Eve. Let's see.
>> Mom's looking to see if she can find a picture with her and Eve to compare. We should have run a measuring tape. What were we thinking?
>> Yeah.
>> Anyways, we're hanging out in the little wreck room here on Pearl's floor.
>> They're playing pool, huh?
>> Yeah.
>> Are you going to play pool?
>> No.
>> Okay.
>> I can't find any proof.
>> Pearl's been doing her stuff today. Her physical therapy.
>> Did she put the table down?
>> All right. So, >> we are going to be >> I think done with this this particular video. I think Pearl's feeling a lot better.
>> You look way better than you did when the video started. We'll say that much.
>> Oh, is this like the whole video?
>> We went all the way back >> actually. So, >> I was just thinking today like the because I can like take I can walk with assistance and taking a few like some steps or up the stairs and then I'm wheeling around and sitting up. I remember the first thing after surgery, something like I guess in a way I I could do or couldn't do was just I had to just stay and lay bed flat and I couldn't even move my like um neck like >> you couldn't hold your head up.
>> Oh yeah. Right. My arms like or I'll get like dizzy and stuff.
>> Yeah.
>> But then like in a way looking back at the progression now >> Yeah.
>> I'm here.
>> Crazy. It's pretty awesome. And that's 2 weeks or 2 and 1/2 weeks.
>> 2 and 1/2 weeks >> since the first surgery.
>> Well, and I was here earlier when Pearl was in PT down in their like gym. I just like felt I was like teary. I just was like >> we've never interacted with any of this stuff before thankfully.
>> Mhm. But like just the technology, I felt like I was just so grateful for all the medical technology and all these people who've studied to be able to just jump in and help Pearl and they have like you got here 2 days ago >> and just like so much help.
>> Like I didn't, you know, when they were like, "Oh, we wanted to go to this other hospital." You're just like, "Oh my gosh, just come home." But like >> you're like busy.
>> Yeah.
>> You're like here.
>> Yeah. Because we were kind of resisting the full-time rehab stuff. because I didn't know how much it would help. But being here today, I just feel nothing but gratitude and I felt like nothing but like love for the physical therapist and occupational therapist helping Pearl. I was like, "Thank you for helping her."
>> Yeah.
>> Okay.
>> So, maybe Pearl wants it to be a week.
>> We'll see. They want her to be here for two weeks.
>> She's just anxious to get home, >> not miss a month of life at home. But >> we'll see.
>> Yeah.
>> Just keep working. I mean, you're doing great.
Okay. So, we'll end it there. Eve, how you feeling about it? Good.
>> You feel good?
>> Yeah.
>> Okay. Good.
>> I love >> you love Pearl.
>> Yeah.
>> Okay. So, that's it for now. Thanks for coming along, everybody. And I guess we'll see everyone on the next video.
Yeah. Bye.
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