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Thread: Daughter's upcoming hip surgery - need advice, opinions, anything ))

  1. #11
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I will be praying for a successful surgery for your daughter! The best advice people gave me was that the first week really sucks and then it is just boring...and they were right! Once we got into a routine with dealing with the cast it was ok. We kept a calendar in Caitlin's view (we had a rented hospital bed in an empty bedroom for her the first time she had it done)...and every day we made a big deal about crossing off another day. :) Having a real hospital bed that went up and down and being able to raise up the head and feet as needed was incredibly helpful. I was pregnant at the time (which was why we had an empty bedroom, lol, it was for the baby coming). Having a lot of pillows helped too, good for helping them sit up in the casts and also for in the car to arrange them on the seat. She did not fit into a regular car seat in her spica cast so we had to improvise. Hope it all goes well!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #12
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    Oh, I'm so sorry that I am only seeing this thread now. How did I miss it?! I am so sorry that you are facing this awful decision for a very complicated surgery. We had a terrible time with multiple hip reconstructions and then finally a femoral osteotomy (removal of the ball of the hip joint). That ended up by the femur migrating into the pelvis due to spasticity. We never had an artificial hip though. The doctors said it would just dislocate as well. I will absolutely add you to my prayer list. My son Nicholas did not have seizures, but he had a terrible spasm when the cast came off. Good luck, it's a tough road.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  3. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((tina & Sonya))))))

    My heart breaks for Sonya's pain. I do understand, as Jon has tremendous pain when turning in bed on both of his hips. Oddly, the hip with the rod and pins is more painful than the other hip, which is essentially dust. I'm so sorry for Sonya's suffering.

    Wow ... surgery next week. I didn't realize that it was scheduled so soon. I'll step up the prayers for you and your husband to continue to feel confident about your decision. Take deep breaths. Try to get some sleep and rest, so that you have some under your belt for the coming weeks. Eat well, keep up your hydration, and take vitamins. This will build up your stamina and energy.

    I think Diazepam and Ativan are in the same family as Valium. I recommend using it sparingly, as it loses its effectiveness after a period of time, requiring higher doses. It can affect the respiratory system, as I mentioned.

    I hold onto hope with you, and I'll continue to pray for a successful surgery and recovery. I will be sending you lots of positive energy on 4/23.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  4. #14
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    Yes!!! As Rose said, diazepam and ativan will be more important than (or as important as) pain killers post surgery. Good luck - thinking of you.
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  5. #15

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    Philosophical Post: I am questioning and not sure if I should post this.. I want to share my story, but I don't want to dissuade any parent's from surgery. I am not anti surgery. I am starting to feel like mine was a waste of effort on all our parts.

    I had bilateral femoral osteotomies at almost twelve. I am in my 30's now. And am starting to finally question was it the right thing.. I really liked my care team. Of course I love my parents. It's taken me twenty years to reach just because everyone at the hospital was really nice-that doesn't mean I should had had surgery-ever..

    I was ambulatory prior to surgery. No history of seizures. No respiratory issues.


    My story as everyone's story is complicated. I can tell you what others on this board says-it's a long road back.. I say expect 2 years before you'll have the final outcome.. Now of course you'll be able to go back to day to day routines w/o major pain way before that! Bu in terms of mobility levels-I say two years.

    As I am sure you know it's a harder surgery recovery wise.. Although my recovering wasn't the greatest experience, long term, not why I question it. I had some spasams post op. I'd say 2-4 weeks was when they hit.. They put me on Valium. I had no issues with them needing to up the dosage.. My team took the approach give valiuim liberally to try and prevent the pain spasam cycle from just spiraling out of control for the kid... That worked for me. Spasams weren't fun,, that go round but I saw other kids in the hospital go through them worse.. I fractured, freak thing, not from a fall or anything, just happened. 2nd week of rehab I had to be sent home. Couldn't do anything for myself for a month. My mom had a 65 pound infant who talked and always wanted her bratty friends around 7 weeks. Like three in the hospital than four at home. Sure it was a long for her as well time for. When I went back to rehab, I started to transfer, dress myself and go to the bathroom by myself again.. Turned back into a 11 y/o kid who just couldn't walk, yet..


    Shortening post because I feel I should start my own thread about my long term feelings... Your daughter's situation seems very different than mine. So my comments aren't relevant.. Best of luck!!!!! Mom's are truly hero's whenever a surgery such as oseotimmies are done!1
    Last edited by jul97; 04-19-2013 at 07:39 PM.

  6. #16

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    Advice If I wanted to combat post surgical boardem-I'd buy a roku!! It's a internet streaming device for your TV, you can watch netflix and other movie channels., I bought myself one last year for xmas. I so LOVE it and get one if my kid/adult was recovering from surgery! All kinds of programming you could keep a five or a 55 y/o amused with one-love it. easily ordered from amazon

    Also I was doing research for a book I am now trying to publish and found this link of a site that sales products for people in casts and such and thought "I bet some on child neurology would like that site."
    http://www.brokenbeauties.com/

    I also saw this wheel chair pad and it reminded my of after my first surgery, I was in the hospital on the med/surg floor for a good 10 days before they decided to transfer me to rehab not discharge. I wanted discharge but rehab was the right call!! Anyway, I remember the first days in the hospital, they had me in this big wheel chair with leg rests that stick out.. I call it a old school chair. It was very uncomfortable.. Hard plastic as a seat.. The arm rests that you touched you were hard metal.. Just one of many discomforts of the first week or so.. When I saw this picture http://www.1800wheelchair.com/produc...or-wheelchairs I thought parent's and kids could probably sew something like it for cheaper and make it better.. Put elastic on the side panels so they can easily slip over the arm rests. For younger kids get material with their favorite characters on it.. Older kids corduroy or silk..

    If surgery is next week..Probably don't have time which is fine.. Think Rose is right-rest up!!!

    But for future readers who decided to do surgery. I just thought good pre activity to engage kids in, work on with and help talk about what's coming up.. Then they have something to take to the hospital that will make the first days more comfortable.. Trying to put ten pillows on my chair to get me more comfy-so annoying..I needed a "diva pad" with material I chose..

    Also at 11 I was young enough that taking photo's and making a hospital scrap book still distracted me some from what was going on...Later hospital visits I had outgrown that..
    Finally GOOD LUCK!!!
    Last edited by jul97; 04-18-2013 at 01:58 AM.

  7. #17

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    "The best advice people gave me was that the first week really sucks and then it is just boring...and they were right! Once we got into a routine with dealing with the cast it was ok"

    Hi Lisa,
    yes, our surgeon confirmed that the first few days will really suck, so we're bracing up for that. As for boredom, I'm not that worried since Sonya wasn't very mobile before anyway, so she and I are used to entertaining her against her limited mobility - I'm packing her favorite CDs now, picture books, her favorite corn flakes, etc. (she's quadriplegic and just mastered eating pieces of food on her own (hand-mouth coordination), so this is currently a great hit for her as well as entertainment - and I can relate to her feelings - not being dependent on someone to give her her favorites, but to be able to do it on her own, at her own pace - oh what a feeling!

    "We had a terrible time with multiple hip reconstructions and then finally a femoral osteotomy (removal of the ball of the hip joint). That ended up by the femur migrating into the pelvis due to spasticity. We never had an artificial hip though. The doctors said it would just dislocate as well. I will absolutely add you to my prayer list. My son Nicholas did not have seizures, but he had a terrible spasm when the cast came off."
    Donna, you've said it in a nut shell (( This is one of our greatest concerns - the likelihood of the fact that her hip will dislocate again, and again, regardless of the surgery, due to spasticity, and her increased spasticity while in cast and after the cast removal which will outweigh the surgery results and all that she has to go through ( I've read about Nicholas having multiple surgeries, but I didn't realize many of them had to do with his hip reconstruction, and I can only imagine what he and you had to go through
    Last edited by tina_r; 04-18-2013 at 06:42 AM.

  8. #18

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    Jul..such a post! Thank you for your honesty and taking time to write your perspective - I really value that, especially since it comes from the first-hand experience - sometimes I wish I could look inside my daughter's brain, heart, and see physically what goes on in her mind, her thoughts, emotions.. We do understand each other a lot, and this rapport has increased over the years, but sometimes, since Sonya is nonverbal and her cognitive development is delayed, I wish I could understand more, read her hidden thoughts, and I wonder if there's anything with respect to her that she would like for me to do differently (of course there is and I keep learning).
    Your post has unleashed the whole set of emotions that I'd prefer to stay buried - emotions that have to do with Sonya's 1st year of life: she had conjunctivitis of her right eye ever since she was born - at least that's what they said in the maternity house - we did all kinds of treatments but nothing helped, the situation got worse, conjunctivitis turned into dacryocystitis (nasolacrimal channel inflammation) and got to the point when the only option (according to doctors) was to do her nasal channel drainage - 'a simple procedure, takes 1-2 minutes, after that everything will be fine'. The very next day after this 'simple' procedure Sonya went into a coma (pneumococcus meningitis) and came out of it one month later with hydrocephalus, epileptic seizures, quadriplegia, and all her skills that she had acquired in her first 3 months lost. The doctor who did the drainage said the reason was she had built up so much pus in her nasal channel that, once 'stirred up', it penetrated her brain and triggered the process.

    Was it the reason or did it happen because the tools used for drainage had not been properly sterilized? Would she have had a different outcome had I never agreed to this ... drainage, or the pus would keep building up and penetrate her cranial cavity anyway? I'll never know.

    Will she have a better outcome after these two surgeries on her hip or, by doing that, I'm just opening Pandora's box? Will, if left untreated, she'll be able to enjoy 'the goodness of the Lord in the land of the living' with her family for many years to come, despite her limited mobility, or will she, a few years down the road, in view of how rapidly her femur and pelvis have been displacing for the past few months, tugging along other organs, worsening her scoliosis, etc., have to face the same orthopaedic and, actually, life threatening problems like the newly adopted girl of my friend has to face now because her orthopaedic problems were never treated – http://kacirek.blogspot.com/2013/03/...a-kacirek.html I don’t know.

    Sometimes I wish God would let us see a few months (years?) down the road, but then I think, nah, God is wise and knows what He’s doing, we would go mad otherwise. For now we just have to pray and hope that we’re doing the right thing while trying to be the best advocates for our children. And I really, really thank you for your thoughts – that’s what this forum is for – to hear all kinds of opinions, to share experiences, positive and negative, to be able to weigh them and then make one’s own weighted decision – the one we’ve made for now – is it the best one? are we making a drastic mistake? One thought about my decision all those 10 years ago gives me goose bumps, for now we just have to pray and hope that we’ve weighed all pros and cons and know what we’re doing (well, we don’t, we just hope we do).

    And I do thank you for understanding and not blaming your mom and for preserving positive attitude regardless of all that you had to go through!!!

  9. #19

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    Sonya's surgery has been postponed due to urinary tract infection (detected in urine tests, no outward symptoms). Now we're treating her UTI, and then she should be 'infection-clean' for 2 weeks after her complete recovery (anesthesiologist requirement), plus there's a queue for the only separate room in the ward where Sonya could stay with her parents (the surgeron held the room for us for this week, the rest of the rooms are for 6 children each). Thank you for all your support and prayers!!

  10. #20
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tina & Sonya))))))

    I'm so sorry that Sonya has a UTI, but I'm glad that it was detected prior to surgery.

    So, are you looking at a month's wait for surgery? Two weeks antibiotic, two weeks infection-free. And then hoping for the single room to be scheduled?

    I believe there is a reason for everything, even if we can't figure out what that reason is.

    And, I also KNOW that, with a child, who has complicated medical issues, nothing is ever easy. The situation, the diagnosis, the treatment, the surgery, the this the that... The endless waiting for tests and results. The agonizing over making a decision. It's stressful and difficult.

    My heart goes out to you, your husband, and brave, sweet Sonya.

    I'm sending up healing prayers and that the antibiotics are effective and efficient, with no adverse side effects. And I'm praying for you and your husband as you wait.

    We're here for you. Please keep us posted.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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