What Does “Safe” Mean When You’re Medically Complex

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Welcome to Ask Win everyone.
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Um today is a life update because for those of you that don't know um that don't follow me on Facebook, I have canceled my surgery.
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No, the patient well let me take that back.
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The patient didn't get cold feet because of the surgery itself.
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The patient got called feet because of CP.
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So basically what happened is I met with my medical fiduciaries, and I have all that paperwork written out.
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I have a living will, I have all that stuff.
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Yes, finally, years went by when I was saying after my dad died to get your stuff together, especially when you have a disabled child, and yet I didn't have my stuff together.
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So now I do.
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And so they were going over it with um me because at the time I revoked I verbally revokes my DNA, do not resuscitate.
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And so they were going over the paperwork with me right before my surgery, which was supposed to be October 22nd, and then I told them what was going on, and I knew what was going on, and basically my doctor works out of one hospital.
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My former doctor works out of one hospital, which is a surgery center.
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That's all fine and dandy when you don't have CP that could do a sideways, dance into the ICU as quick as I did in January.
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And so fast forward to the day, October 14th, I was supposed to have surgery tomorrow, actually.
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Fast forward to the day, I um almost got in a fight with my Botox doctor because of reasons my kneecap is popping in and out of place.
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It's very unstable.
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I have hardware that's no longer working, and it wasn't the type of hardware that was supposed to come out, but it no.
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And then she wants me to go back to Emma to my original doctor.
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I said I don't think so, because I need a hospital with ICU just in case CP does a sideways dance and dances itself into the ICU because if um you guys remember correctly, in January where I opened this year, I did a sideways dance um into the ICU in Mesa, Arizona, and I had my surgery in Phoenix.
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So for those of you that know Arizona, know Mesa, this is Phoenix.
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And what I didn't tell you is that they were people were so thankful that I was in the ICU.
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Is what I didn't tell you is those dumb, dumb doctors at also at Amazon Especially Hospital, where my former doctor has rights, could not find ICU, let alone wait it with a patient who was critical condition at this point, waited to send me to the ICU.
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And my medical liaison, God God bless her, Melissa Johnson of senior care management, huge shout out to her.
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Um said, We basically don't care.
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Will you send win?
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Just send it now.
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Just do it now.
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So basically that's why they sent me to Mesa where I lived for two weeks.
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And um part of those two weeks were 24 hours intubated, and part of those two weeks were 24 hours intubated in the medically induced coma.
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Yes.
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I don't remember.
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I don't remember what happened.
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I don't remember how, and the funny thing is, my surgeon and I'm consult having consultation with um right now is in Mesa, and the reason why I'm consulting with him is because he specializes in hips and knee replacements.
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So I'm hoping for a partial knee replacement, or a replacement of the kneecap itself, or what they call a groove surgery, meaning they will go in, remove, remove my kneecap temporarily, and they will take a scalpel to my kneecap and make the groove a little bit bigger.
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Fun fact about cerebals and Daniel's don't probably shake your head at this one, even though I can't see it right now.
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But sample palsy's kids in general are little, are little.
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We are little, we don't have big bone structures, or bone structures barely keep us alive.
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And um so we are little, we are small stature, we are small in height, we are little.
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So my little kneecap is suffering because of my little bone structure.
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And Danielle's shaking her hand at this point because I know she is.
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I'm hoping for a partial knee, but we'll see what he says about CP.
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So um I would rather go with him, um, Dr.
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Herman, out of East Mesa on the house, because of he specializes in these and hips.
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Number one.
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And so that's fabulous.
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Also, he's a member of my one of my fabulous hospital networks, which happens to be my heart hospital, and I mean not physical heart, I wish.
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But when I say my heart hospital, I have a love and affinity for this hospital.
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Always will, always will love it because the staff and the doctors are wonderful.
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But I spent uh a week in honor house because of my back, and they took care of my sick little body when I got pneumonia, slash attorney bowl, slash my church family took care of me.
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I didn't have a luxury of aids at AIDS that come to the hospital at that time.
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So um, so basically this hospital network took care of me when I needed it the most.
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And that's after my second spinal fusion.
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My first spinal fusion 15 years ago did not take, so and that was done at a children's hospital in Colorado.
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So yeah, so that is why I have a love and affinity for this hospital, because it took care of my back and me when I knew nothing about Arizona Medical or when I so I was a baby Arizona resident, a baby in Arizona, just moved there and proceeded to have a six-hour back operation.
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Didn't know which way was up.
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And so my church family slash the which my church family has changed, but some of them are still um with my church family.
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And when I say my church family, the Episcopal Church, and the Episcopal Church has embraced me like there's no tomorrow.
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They know I'm a little off annie over here.
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When I say that, a little off annie, and because I have no parents, uh, they know my history.
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So, and I went off that player list, but that's not going to happen until I have this surgery.
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And this is gonna be my last surgery forever, unless it's emergency.
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Unless they say you need emergency surgery, then I'll do it.
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But this is gonna be my last surgery forever.
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Leave CP alone, leave win and ours alone, I'm allergic to anesthesia anyway, I'm allergic to propofol.
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So the less anesthesia risk, the better.
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And so that's why I want uh MPFL slash a groove surgery all in one two for the price of one, all partial knee, because I want this knee fixed, I want the hardware removed, I want this knee fixed.
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So that's my story, and I'm sticking to it.
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And little older me is gonna be so damn persistent, and it's going to be interesting.
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Oh, and I have my consultation on October 27th, so yeah.
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Little older me is gonna be the squeaky wheel that gets the grease, and I'm sorry to medical system.
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Little older me is going to advocate for self and I'm going screaming from the rooftops when I wake up and have a partial knee, I'm gonna scream Yahoo, or have the groove surgery plus the BFL, I'm going to also scream Yahoo.
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So I Yahoo is gonna be said when I wake up from my last surgery because it's going to be my last surgery.
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I'm 40 years, I'm almost 40.
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My bones are bad enough, they're tired of being cracked open.
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And my doctor said to me today, the clicking and popping is not a big deal because as you age your bones get old and you're almost 40, and she gave me the almost 40 speech about my bones clicking and popping.
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But I want the hardware removed so that my knee can actually bend.
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Right now it's not bending without help, so that's why I'm looking at a partial knee or MPF surgery with a groove, making the groove bigger where the kneecap sits.
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So I will let you guys know what we decide.
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I will also let people know on Facebook.
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And so that's my story, and I'm sticking to it.
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Danielle, do you want to leave us out?
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Yeah.
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What the cute Brondy said, thank you for following us.
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And I think the cute Brondy and I are both emotionally and physically exhausted.
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I know I'm emotionally exhausted because I've been so busy.
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So thank you for following us.
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Oh yeah.
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Oh yeah.
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And the cute little Blondie, Danielle, is going to be in a play, um, called Cinderella in Aspen, obviously, and she is so excited that she gets to perform in that play with abold able bodied actors.
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So I'm so excited for her.
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But can we talk about this offline?
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It's amazing.
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It's amazing, it's amazing, it's amazing.
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I am so stinking happy for you.
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And so, yeah, that's why we're a little emotionally and physically exhausted, because see we choose to run around like chickens with all I had to cut off.
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CP doesn't like it, but we push through CP and make CP scream half the time and then fall over and say, we're done.
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And that's how uh Danielle and I do it, and probably the most of the CP population.
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But I um so my surgery is on hold.
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I will keep you guys uh updated as I always do on what we what we decide to do on surgery.
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Yes, I'm having surgery, yes, I want my mobility back, but I just have to decide what surgery is right for me, whether it's personally or totally on groove slash MPFL surgery, which fixes ligament in place.
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So I will keep you guys updated what they say, and I will let you guys go.
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And Danielle already said thank you for following us.
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So I will come beyond it and say thank you for following us.
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Bye you guys.
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Bye.