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| JayJay daughter in hospital; 6 yr old Amber in hospital | |
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| Tweet Topic Started: Sep 11 2006, 02:15 PM (5,197 Views) | |
| Queenbee | Sep 11 2006, 02:15 PM Post #1 |
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Moderator
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I spoke with JayJay/Janet the other day and I meant to post this earlier but it's been one of those weekends. Her daughter Amber has an on going bladder infection that hasn't cleared up over the past 2 months. She was admitted to the hospital on her 6th birthday. Their going to have an Infectious disease specialist, find out what is going on. Please send you special thought to Amber getting better and beat this infection. I'm sure janet will keep us posted too. (((((Hugs))) Judy Here's a copy of what Janet posted in the Vegas thread. Hiya folks... I just posted this on PM Vegas thread... Not sure if you're going over there anymore so I'll copy here: Had some really bad events over the weekend... My daughter is in the hospital with chronic urinary tract infections. She's on her 3rd one in a row, been on antibiotics since mid-July, and the infection she's got now is not cured through oral antibiotics. She was admitted Friday (on her 6th birthday! ) she's on interveinous antibiotic, will see an infectious diseases specialist tomorrow. In the meantime, we've done 2 ultrasounds, a VCUG (test where they cathaderize and check for functionality of bladder / kidneys, and finally and 2 MRI's... When she was born, she had a tumor-type growth (fatty tissue) that had attached itself to her spinal chord in which she needed surgery to release it. They wanted to check up on that.... Long story short, today we finally got the news we were dreading... The MRI revealed that the fatty tissue has started growing back inside the spine again, causing problems with the nerves. Because of this, she apparently is not able to empty her bladder completely, causing bacteria to grow. Tomorrow we will hopefully see the neurosurgeon (along with the pediatrican, infectious diseases specialist and urologist), but it appears that my baby will once again undergo back surgery. Nothing is concrete yet because we're still undergoing tests - tomorrow she's getting some nuclear medicine thingy test called an eurodynamics study... guess I need to do some research yet tonight while I'm home. Their main concern right now is to prevent kidney damage. I'm trying to be positive, however, we've been told that it is highly likely that she will live a life possibly incontinent, partially so, or dealing with these types of issues. Even if we do the surgery, we don't know if it will grow back again. But on the flipside, maybe this is the answer I've been looking for over the past few years going through wetting accidents. Sorry to come here with my sorrows... My little Amber is as spunky as any healthy and active 6-year old. Eveyone who walks near her thinks she's on her way out of the hospital. You'd never know there was a thing wrong... It's very very very odd that a child with such a terrible infection shows absolutely no symptons except wetting her pants on ocassion. I totally don't get it.... I'm off to bed gotta be at the hospital early tomorrow am. Amber sure could use a prayer or two... Thanks my dear friends... Love to all of you... |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| maccascruff | Sep 11 2006, 02:31 PM Post #2 |
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Sing the Changes
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Get well soon, Amber. |
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| Rose | Sep 11 2006, 02:31 PM Post #3 |
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Well, here's another clue for you all, the Walrus was Paul...
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What a horrible way to spend your 6th birthday. Sending lots of positive thoughts so Amber gets well SOON!
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![]() "I'm in awe of McCartney. He's about the only one that I am in awe of. He can do it all. And he's never let up... He's just so damn effortless." ~ Bob Dylan | |
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| BeatleBarb | Sep 11 2006, 02:33 PM Post #4 |
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Oh, poor little thing! Get well, Amber, and out of the hospital so you can celebrate your birthday. I sure hope they can find out what's going on and treat it properly. My positive thoughts are with JayJay and Amber. |
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| Deleted User | Sep 11 2006, 02:37 PM Post #5 |
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You're in my thoughts. |
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| Queenbee | Sep 11 2006, 03:22 PM Post #6 |
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Update on Amber. Read the first post. Thanks. |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| BeatleBarb | Sep 11 2006, 03:28 PM Post #7 |
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Yes, I saw this on the Vegas thread, Judy...thanks. Such an ordeal for a little 6 year old. I sure hope they can get to the bottom of this and correct it all for her. |
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| MaccasGirl | Sep 11 2006, 03:29 PM Post #8 |
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Born To Be Wild
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You will be in my thoughts and I'll pray for Amber. I know what you're going through and I hope the outcome is good for her. Hold tight to your kids. |
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And in the end...The love you take..Is equal to the love you make. | |
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| iscreamer1 | Sep 11 2006, 03:34 PM Post #9 |
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Baking Fairy Cakes
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Jayjay, thinking of you and Amber this morning. Stay strong and positive and everything will work out. Love you Irene |
Laughter is the shortest distance between two people - Victor Borge | |
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| Dorfliedot | Sep 11 2006, 03:48 PM Post #10 |
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Beatlelicious
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I hope everything be ok.. Wishing you all the best.. |
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| Peter | Sep 11 2006, 04:40 PM Post #11 |
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Unregistered
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fingers and legs crossed for wee amber. |
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| theonlyfab4fan | Sep 11 2006, 06:01 PM Post #12 |
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I AM THE BIGGEST JOHN FAN!
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Poor baby girl. Please get better soon, and jay jay make sure you take good of yourself too. Hugssssssssssss |
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You say you want to save humanity but it`s people that you just can`t stand John came to me in a dream and this is what he said. "I had a vision of a man on a flaming pie, and he told me that Betsy with a B not Lisa with a L is the biggest fan of mine". John trumps 'the boss' ! I WAS ROBBED BY THAT DEVIL WOMAN | |
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| bluemeanie | Sep 11 2006, 11:10 PM Post #13 |
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is now a happily married woman x
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Hope everything is goes ok with Amber - sending my love |
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Jayne x is loving life and is so happy xxx | |
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| beatlechick | Sep 11 2006, 11:23 PM Post #14 |
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In Paul's Arms!
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My boyfriend was born with a kidney outside of his body and the other kidney only partially working. He has had numerous surgeries since birth which is rough on only one partially working kidney. He is an ostomy patient, meaning he has to wear an ostomy bag to urinate in, but other than that, you would never know he has that kind of problem. Poor man wasn't supposed to live past the age of 18, he was born with a multitude of problems, but he is now 52 and still going pretty strong. I know that Amber will have her problems from time to time but she will live a good long life, I am sure of that. Good luck JayJay, take care of yourself, give our love to Amber and your family. |
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| Beatlesaholic | Sep 11 2006, 11:35 PM Post #15 |
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Me At Thanksgiving On November 24, 2011.
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Amber Is In My Prayers! |
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Paul John George Ringo Are My Favorite Beatles! The Beatles Rule!!!!! Beatles Biggest Fan Kirsten Julian Lennon Biggest Fan RIP John Lennon RIP George Harrison RIP Maurice Gibb RIP Andy Gibb RIP Michael Jackson RIP Grandpa Nick RIP Grandma Tess My Favorite Beatles Movie And Album Is A Hard Day's Night & My Favorite Paul McCartney Album Is Good Evening New York City! Gold Strawberry: BeatlesBiggestFan (16 votes) ![]() | |
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| maccascruff | Sep 12 2006, 01:22 AM Post #16 |
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Sing the Changes
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Any news? |
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| cking | Sep 12 2006, 02:33 AM Post #17 |
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Hey Janet, I prayed for her and the dr this morning. Let us know how things are going. You're in our thoughts and prayers. Carol |
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| jayjay | Sep 12 2006, 02:44 AM Post #18 |
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Hi all... Just got off my hospital shift; relieved by my dear Dad who is taking the night shifts with her. I'm so so lucky to have my parents here to help. Thanks so much for your thoughts and prayers. They are much needed and very much appreciated. They did the eurodynamics study today; was quite interesting. I think they've determined that her spinal chord is definately the problem, now they're trying to determine to what extent the damage is. We've made an appt. with the surgeon's office who did her surgery in 2001. He doesn't have priviledges in the hospital she's in. The neurosurgeon in the hospital we're in will be our second opinion I suppose but they never showed up today. Neither did the Urologist. :angry: I'm so proud, Amber got cathedarized today and didn't even cry! She's a brave little girl. They have cleared up the urine, however, there is some type of bacteria they've found in the blood. Until they can identify that, she'll be staying in the hospital. They mentioned urine in the blood, but mentioned it may have been a contaminated sample. Just waiting for lab work at this point... I'm going to try to post a picture of her here..... I'll keep you all posted... no pun intended. Thanks again all my friends... YOu guys are wonderful. |
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| jayjay | Sep 12 2006, 03:07 AM Post #19 |
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Let me see if this works.. I'm not good at this. Hopefully it doesn't come out really big cause I don't know how to fix that without taking forever... This is my little Amber:
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| jayjay | Sep 12 2006, 03:10 AM Post #20 |
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And one more I just HAVE to share with my Beatle friends... She was drinking a very blue snow cone... :lol:
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| Rose | Sep 12 2006, 03:36 AM Post #21 |
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Well, here's another clue for you all, the Walrus was Paul...
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Shes a beautiful little girl...I hope and pray she gets better soon. |
![]() "I'm in awe of McCartney. He's about the only one that I am in awe of. He can do it all. And he's never let up... He's just so damn effortless." ~ Bob Dylan | |
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| scottycatt | Sep 12 2006, 03:42 AM Post #22 |
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JayJay, I just read your news.
So, so sorry to hear that your daughter and your whole family is going such a tough time. She sounds like a chip off the old block, though. That's great that she's so spunky and brave. . . sounds like her mom.
She's so beautiful in those photos.
I'll be keeping you in my thoughts and prayers. I know you would do anything for your girls. Please know that we will do anything to help you.
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Why? | |
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| BeatleBarb | Sep 12 2006, 04:24 AM Post #23 |
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What an absolute cutie you have there, JayJay! I'll be thinking of you and hope she gets well very soon. |
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| Deleted User | Sep 12 2006, 04:30 AM Post #24 |
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I will pray for her. |
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| beatlechick | Sep 12 2006, 06:15 AM Post #25 |
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In Paul's Arms!
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What a doll with such bright smiling eyes. She will get better soon. Much luck and love go out to your daughter, you, and your family. |
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| Dorfliedot | Sep 12 2006, 06:18 AM Post #26 |
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Beatlelicious
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She is a beautiful child..I hope she gets better.. |
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| JeffLynnesBeard | Sep 12 2006, 10:55 AM Post #27 |
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Administrator & Moderator
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Sorry, I've only just discovered this thread... It's very sad and worrying that you and your family are going through this, JayJay - I wish Amber a speedy recovery and hope the doctors are able to find & treat the problem effectively. It's wonderful that she's being such a brave little girl, you must be so proud of her. They're lovely photos of Amber, thanks for posting them - I'm sure there will be many more happy times to come. With love. x |
| ...and in the end, the love you take is equal to the love you make. | |
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| iscreamer1 | Sep 12 2006, 01:22 PM Post #28 |
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Janet something tells me if she is anything like her mom (and I think she is) she will fight this and come out better than before!! Sounds like she's got spunk and lots of courage AND she's beautiful too!! Thinking about both of you! Take Care of yourself! Love Irene |
Laughter is the shortest distance between two people - Victor Borge | |
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| Deleted User | Sep 12 2006, 01:35 PM Post #29 |
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I agree. Even with blue teeth.
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| Merry | Sep 12 2006, 01:46 PM Post #30 |
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I too just saw this thread, and I want to send my love and best wishes to Amber and your family, Janet! She IS a real sweetheart and she appears to have alot of spunk that will get her through. I'll keep you and Amber in my thoughts and prayers! Merry
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| maccascruff | Sep 12 2006, 02:22 PM Post #31 |
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Sing the Changes
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I love the picture with the blue teeth!
Seriously, I hope Amber gets well soon and you and your family can enjoy more fun times together. |
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| scottycatt | Sep 12 2006, 05:10 PM Post #32 |
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JayJay, just checking in to see if you have any updates. I hope your little pixie is feeling better today and that the news will be good. Thinking of you today.
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Why? | |
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| Queenbee | Sep 12 2006, 05:30 PM Post #33 |
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Amber's smile is as blue as her eyes. Such a cutey. Hope you hear something positive soon. Make sure you get some rest too, Mommy!!! ((((xoxoxo))) Judy |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| tinybubbleca | Sep 12 2006, 07:59 PM Post #34 |
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she looks just like you JayJay!!
such a cutie. Sending you extra love and hugs your way honey! |
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| Sandra | Sep 12 2006, 09:00 PM Post #35 |
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What a beautiful wee girl. I hope she is soon feeling much better Janet. |
| <a href='http://eapr-1/@0@Sandra@1@Edinburgh%2C%20Scotland@' target='_blank'></a> | |
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| bluemeanie | Sep 12 2006, 09:25 PM Post #36 |
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is now a happily married woman x
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Janet
how is Amber today ?? you have such a beautiful daughter - hope she is getting better
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Jayne x is loving life and is so happy xxx | |
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| cking | Sep 13 2006, 12:41 AM Post #37 |
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Janet, what a doll she is. I hope everything is going well. Hang in there and don't forget to take some time for yourself. Carol |
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| jayjay | Sep 13 2006, 02:12 AM Post #38 |
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You guys are the BEST!!! I love you all... Nobody mentioned the BEATLES SHIRT!!!??? That was why I posted that one... I do have some good news... WE ARE HOME!!!! Lots of follow up visits starting Friday with the neurosurgeon, then back to the pediatrician, urologist, etc. etc. etc. It's going to be a long journey... I am so frustrated though... After 5 days in the hospital, I'm more confused than when I went in! One doctor says one thing, the other doctor says something else, and they totally contradict each other. I'm so concerned because they kept telling me that the Urologist is the key player, and when the Urologist FINALLY came today, he tells me he doesn't need to see her for six months???!!! WTF!!!??? I went ahead and made an appointment anyway. He's GONNA see her! :angry: Every doctor told me that she is unable to empty her bladder completely and that was causing the infections. Now HE tells me that she can empty her bladder just fine, but her bladder is extremely small... he says just come back if she gets another infection. Well, sh*t, I didn't know she had the infection in the first place! I went in for an EAR infection, and simply mentioned that she was having wetting accidents. That prompted the urinalysis that started this whole mess. He's blaming it on the tethered spinal chord, and the neurosurgeon is saying it's the bladder. I feel like the mediator! :wacko: The whole thing has been a nightmare, even down to trying to fill the perscription they gave me tonight, then when I finally got it, there were inconsistencies in the doesage. :hmm: I wouldn't be so concerned except that I've already been warned that this is a very risky antibiotic which could potentially cause cartiledge damage. When I called the doctor, she 'must have made a mistake'... JEEZ!!!! I feel like I've earned my PhD over the past few days! You really gotta keep up and ask SO many questions... I would hate to be in there alone with no one watching over me! Like my hubby said, if you're not sick when you go in, you're destined to be sick by the time you get out! Thanks for all your thoughts and prayers...
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| scottycatt | Sep 13 2006, 02:22 AM Post #39 |
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Janet, glad to finally hear from you!! Wow, sounds like you're really going to have to do your homework and stay on top of these doctors. Are you able to find a different urologist?? At least to get a second opinion?? What kind of antibiotic is she taking?? It's not Cipro, is it?? Glad you caught the mistake. I just went through a similar thing a couple of weeks back with my doctor and pharmacy. Each one blaming the other and me getting stuck with the bill! :angry: Anyway, glad to know your baby got to come home. And, I did notice the Beatles shirt, but it was the blue teeth that took center stage! I mean, you don't see that everyday!! :lol:
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| jayjay | Sep 13 2006, 02:30 AM Post #40 |
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YES!!! IT IS Cipro!!! What can you tell me about it???? On the RX she wrote 2.5 ml 2x a day. When I finally got it (from her calling it in), the bottle says 1 teaspoon 2x a day. I called her AGAIN, and she did the calculations again and claims she must have made a mistake in the hospital. I wonder what would have happened had I given her too little...? Back in the hospital next week? I'm so annoyed and confused I'm ready to cry...
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| theonlyfab4fan | Sep 13 2006, 02:57 AM Post #41 |
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I AM THE BIGGEST JOHN FAN!
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Awww big hugs Janet. Amber has been through the mill and so have you. Cipro is a good antibiotic and I am so glad that you caught their mistake. Don`t be surprised though if she has some bowel disturbances and upset stomach from it. It is usually the one I end up on when I get a nasty bug that I can`t shake and I frequently have those side effects. I even went through a period of time when I had a pic line inserted and cipro was pumple into my veins as an outpatient , but it saved my life. So I have high hopes that your daughters ordeal will soon be over. |
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You say you want to save humanity but it`s people that you just can`t stand John came to me in a dream and this is what he said. "I had a vision of a man on a flaming pie, and he told me that Betsy with a B not Lisa with a L is the biggest fan of mine". John trumps 'the boss' ! I WAS ROBBED BY THAT DEVIL WOMAN | |
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| tagandolfo | Sep 13 2006, 03:00 AM Post #42 |
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Janet, your daughter is absolutely beautiful. Keep your chin up. Hope the doctors get more cooperative! Keep us posted |
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| scottycatt | Sep 13 2006, 03:03 AM Post #43 |
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Janet, I just did a little brushing up on this drug, as I was thinking my memory might be fuzzy. My mom was given this drug back in 1999, when she was hospitalized with sepsis. At the time, the drug was new and was considered to be a drug of "last resort", due to its strength and the fact that, if a person's body developed a resistance to this drug, there was no other antibiotic that could be given. I did some quick checking on the NIH drug website, Mayo Clinic page and on Bayer.com (they manufacture Cipro), and basically, all three sites have the same info. Cipro does seem to be indicated for bacterial infections, but isn't recommended for children under the age of 18, unless nothing else is available. I'll post the links and you can read for yourself, if you haven't already. I know you're going to watch Amber's caregivers like a hawk, and you should!! Good luck and know that I'm thinking of and praying for you and Amber. http://www.mayoclinic.com/health/drug-information/DR202656 http://www.nlm.nih.gov/medlineplus/druginf...er/a688016.html http://infections.bayer.com/en/index.html |
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| LITTLE LAURA | Sep 13 2006, 06:22 AM Post #44 |
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JayJay said..... I am so frustrated though... After 5 days in the hospital, I'm more confused than when I went in! One doctor says one thing, the other doctor says something else, and they totally contradict each other. I'm so concerned because they kept telling me that the Urologist is the key player, and when the Urologist FINALLY came today, he tells me he doesn't need to see her for six months???!!! WTF!!!??? I went ahead and made an appointment anyway. He's GONNA see her! Every doctor told me that she is unable to empty her bladder completely and that was causing the infections. Now HE tells me that she can empty her bladder just fine, but her bladder is extremely small... he says just come back if she gets another infection. Well, sh*t, I didn't know she had the infection in the first place! I went in for an EAR infection, and simply mentioned that she was having wetting accidents. That prompted the urinalysis that started this whole mess. He's blaming it on the tethered spinal chord, and the neurosurgeon is saying it's the bladder. I feel like the mediator! Awwwwwwwwww....((((((JayJay)))))).I can relate to the above of your post. When I fell terribly ill 3yrs. ago with my kidney, as I was also suffering from other illnesses, all my Drs. were confused & disagreeing with each other too. But I couldn't really blame them in my case, as the symptoms for both my problems are almost identical. Plus my kidney troubles, [they were really serious] which started at about Amber's age, and lasted thru to about 14, had been dormant for over 25yrs. So it was natural for both the MDs AND myself, to assume it was the ongoing other illness, [a very serious digestive malfunction], "acting up". This unfortunately wasted about a year, with me suffering all sorts of symptoms which didn't quite match. Like your daughter I developed all the signs of urinary tract infection repeatedly, but the lab tests always came back "normal", or "contaminated". Even when my Family Dr. decided to go with her hunches and give me antibiotics, the symptoms always came back. And always worse than before. Then I developed incontinence, which soon escalated. Clearly something else was wrong. My Dr. made the appt. with my urologist--who I hadn't seen in 6 years. He booked that same urinary test Amber had. But I never made it. 3 days before the test I collapsed in the worst pain I've EVER experienced, my tummy swelling to the point of me looking 9mths pregnant--in 3hrs. It took an MRI scan to finally diagnose--and it was grim: my problem kidney had not only roared back to life---it was about to explode--literally--with infection. Needless to say emergency surgery followed innediately. Why the long story? Partly to tell you I really DO know what you & Amber are going thru, & to also tell you that, eventually, there was a "happy ending". But most of all to show you how important persisting is. Stay in their face, keep pushing for answers--now! AND action. Believe me you don't want Amber to ultimately go thru what I did 2 yrs ago. Hang in there. PS Amber is BEEEEEE--YUUUUUT---A-FUUUULLLLL! [& I DID notice the T-shirt! ]
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| BeatleBarb | Sep 13 2006, 12:39 PM Post #45 |
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Laura, so sorry to hear what you've gone through...wow, but you are right in giving JayJay the advice to be persistant. So many times, we accept what we're told, because we think doctors should know more, but they don't know our bodies better than us. I've been in similar situations and you have to be your own advocate. JayJay, hang in there and continue to hound the doctors. Your Amber is so precious. I hope the doctors can get it together, get to the bottom of this, and you can get some piece of mind and Amber can get back to the business of being a 6 year old! |
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| iscreamer1 | Sep 13 2006, 01:52 PM Post #46 |
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Jayjay, so glad to hear you are home but I have 2 words for you SECOND OPINION! |
Laughter is the shortest distance between two people - Victor Borge | |
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| maccascruff | Sep 13 2006, 02:36 PM Post #47 |
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Sing the Changes
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Janet, I'm not expert on bladder infections, but from reading this, I'd say second opinion, too. |
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| Queenbee | Sep 13 2006, 08:25 PM Post #48 |
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Hi (((Janet))) Sorry to hear so much confusion with the Dr.'s But do proceed cautiously and get a second opinion from someone who doesn't work at the same hospital. Dr's do cover for each other too. I would be worried using such a strong antibiotic on her. Also if she does wet the bed and she has wet underpants on for any length of time, could the bacteria be traveling up to her urinary tract, plus being on antibiotic could cause her to have a yeast like infection???? I know when I was on antibiotics because of my 5 star toe infection, I had a hard time for a few months. ((Little Laura)) Sorry to hear all the problems you were having. :-( Sounds like you went to hell and back for awhile! |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| jayjay | Sep 14 2006, 04:19 AM Post #49 |
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Wow... Thanks for all the info everyone, and thanks so much Laura for sharing your very personal story! It's uplifting to hear stories that have a happy ending. I have spent the whole evening on the internet, not so much about the antibiotic, but about her condition as a whole, trying to figure out for myself where the problem lies. This is the first time I've had enough time to do that! I think I've finally figured out why the inconsistencies with the docs. First... to answer the quetsion on the antibiotic - according to the pediatrician it is the only follow up for the type of bacteria she had - pseudomonas. I haven't had a chance to do much research on that yet, but she is allergic to penecillin so that's out. The infectious disease specialist had to approve its use since it's typically not used for children - thus the reason I had such a hard time filling it! But he assured me that she'd be fine on it. Thanks, Beverly, for the links... I'm going to research first thing in the am as it's after midnight now. Now, for what I've found... I have gained a better understanding of a tethered spinal cord and the lipoma that has regrown. (Keep in mind that I didn't even know how to use the internet back then and there was really no reason for me to research further because the surgery was considered a sucess). It seems that the neurosurgeon may not have gotten the whole thing when he did the surgery in 2001, and with her growth, it grew back. I've found that this type of problem DOES cause chronic urinary infections. Many of the symptoms of a tethered cord I'm seeing with her... Her left foot is a tad turned in and that is another symptom. It seems that the Urologist knows that the underlying problem is the tethered cord, and he feels that once that is addressed, it might help these urinary problems. I did find out though that surgery after a tethered cord rarely helps incontinence. That was HORRIBLE news. And on top of that, she has an extremely small bladder which doesn't help matters. I feel that it's probably mostly the result of the spinal cord, with some urology issues we're dealing with. God help me... Thanks for all your kind and informative posts, everyone... Amber is such a joy; she's ALWAYS smiling, so rambunctious, and very very affectionate. She was the entertainment on the children's ward - all the nurses went crazy over her. She doesn't deserve this sh*t!!! :angry: As for the 2nd opinions - I'm already on it! That was something else I've been researching tonight... I definately will be seeing another Urologist. The Neurosurgeon is supposed to be one of the best in the nation, but I'll be getting another opinion on that as well. Two brains are better than one! |
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| BeatleBarb | Sep 14 2006, 04:26 AM Post #50 |
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Such an ordeal you've been through JayJay. Suffice it to sayI can relate. When my son was 5, he had an extremely rare disease. It was a miracle he survived it, but the confusion over various treatments was overwhelming until I met a doctor who essentially saved his life. She looked at me and told me she was the one who could help. Luckily, she had the expertise and confidence to do so. I hope you get some resolution quickly and get the answers you need. I know how frustrating this is. I didn't get a diagnosis for months. Also, regarding lipomas...my 17 year old had a 7cm lipoma removed last year and they do seem to regrow. I was told he may be prone to more of the same. Again, I wish you good luck, some peace of mind, and most of all a speedy recovery for Amber! |
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| audrey | Sep 14 2006, 04:49 AM Post #51 |
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Janet, you are correct, ciproflaxin is the best antibiotic for psuedomonas and a tethered spinal cord is very likely the cause of the small bladder and the small bladder is not something that you can fix. And i would venture to say that the urologist is probably correct also, he can treat the results of the problem meaning the bladder infections but he can not stop the problems from occurring, that would be the neurosurgeons job in this case. Do you also have a neurologist??? A second surgical opinion would surely be in order, for many reasons, the first one that comes to mind is that the neurosurgeon that did the first surgery never told you that these buggers often may regrow if they are not taken out completely. Given the location and the nature of these growths, they often are not easy to completely eliminate, but i warrent that follow up after the first surgery would not have been a bad idea. If for no other reason than lack of follow up care, i would get a second opinion of a completely different neurosurgeon. Unfortunately, even if not a practicing partner, these guys do tend to stick together, perhaps a neurosurgeon specializing in pediatrics would assist. The footdrop that you describe also says that there is something going on in the spinal cord. Hang in there Janet, sounds like the ID doc (infectious disease) has you covered on the antibiotics, they can be lifesavers in their own right, so i would depend even more on him that the urologist if that makes sense. You need bug doctors not pee doctors even though the pee is what is affected. But most of all, you need a surgeon who can remove the growth without damaging the spinal cord Thanks to the wonderful world of internet, the information out there is easily accessable to the general public. if you have any questions or do not understand any medical gibberish, feel free to pm me, always glad to help neuro is one of my loves and also ped's |
| a pretty nurse is selling poppies from a tray | |
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| LITTLE LAURA | Sep 14 2006, 05:43 AM Post #52 |
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They put me on Cipro too before the kidney reached that crisis point. I wish I had known it also comes in liquid for kids as I also have an ongoing swallowing problem. Because of this my pills had to be crushed---and they tasted HIDEOUS! Brought out the little girl in me--I'd actually sit & stare at the Cipro/applesauce mushy mess for over 5 mins. before I had the nerve to take it. :rolleyes: :lol: When I was a little girl they were forced to use Sulfa drugs so much & in such huge doses, I developed a permanent allergy to any sulfa-based drugs. Including anti-inflammatories, all of which have some sulfa in them. Which means for the constant pain from the [extremely] rare form of Arthritis I have, I can't take any and am forced to take Tylonal 3, as it's the only painkiller I tolerate well. [& yeah, I have to mash those too---YUK! ] But as me Bro likes to remind me.....at least I'm alive to complain! Your Daughter has such a pretty name btw, JayJay.
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| beatlechick | Sep 14 2006, 06:07 AM Post #53 |
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In Paul's Arms!
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On occasion my boyfriend has to take cipro for his various illnesses. It is the one antibiotic that he can take that won't bother his one remaining kidney. His uncle, a couple of years ago, was having a lot of medical issues where he had a stroke, blood didn't circulate in his leg very well and had half his foot amputated. When his uncle was in the hospital, my boyfriend would stay with him and get on the doctor's and nurses so that his uncle would get some care. Often times they would not answer his uncle's questions but my boyfriend made damn sure that those questions would be answered. He never took "sorry" or "I'll have to get back to you on that" as an answer. You are still in my thoughts and prayers. Good luck!! |
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| Magical Mystery Girl | Sep 14 2006, 07:11 AM Post #54 |
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Boy oh boy!! Sending you, your daughter and your family positive thoughts!! |
| "What the caterpillar calls the end, the rest of the world calls a butterfly." - Lao Tzu | |
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| jayjay | Sep 14 2006, 03:55 PM Post #55 |
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Gosh, you guys don't know how much this thread is helping me right now. I'm so so so depressed; this all just came about so quickly and unexpected. Thanks to all of you for sharing your stories and knowledge with me. Now I feel like such an idiot that I didn't follow up, but I had no clue! Audrey is absolutely right - he should have had us follow up I would think annually with an MRI, but he never mentioned it from what I remember. I do specifically remember asking him if this could possibly grow back, and his answer was anything is possible in medicine, but he made it sound unlikely. Audrey - I'm guessing from your very informative post that you're a nurse? I should know that from posting with you for so long, but my brain is not functioning properly right now. I am so down today from everything I learned last night. And what you posted is consistent with what I'm reading, although I did not read anywhere that a tethered cord can cause a small bladder. But it does sound like the cord is the root of the problem. You're absolutely right... that Pediatric Neurosurgeon should have had us follow up at least with annual MRI's to check regrowth, but he never told us that! I need to do my homework on neurologist - I don't know the difference between a neurologist and a neurosurgeon. :wacko: Now I'm on a journey to find the best neosurgeon in the world! My baby is going to get the best care out there, but I don't know how I'll find out who's better than who... any suggestions besides trusting what their internet sites say? Of course, all Pediatric hospitals say they're the best. |
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| Jacaranda | Sep 14 2006, 05:36 PM Post #56 |
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Jay Jay: I've come in late on this topic but I wanted to say first your daughter is really super cute and since all you can see when you look at the photo is a sweet little thing, the Beatles shirt actually is almost unnoticable! :lol: As the mom of a five-year-old girl I certainly understand the pain this terrible thing is causing you but I'm glad that it sounds like you're on the right track to some help. Cipro is such a strong drug but it makes sense that they would prescribe it since it sounds as though they need it to combat the drug. It is possible though to experience some really strong side effects though. I am allergic to pencillin too and was on Cipro, had to stop it because the abdominal pain it gave me was severe. If you need any help on deciphering drug info PM me; though I'm not an MD or RN I worked for several years as a medical journalist and know about combing through med. info on the internet. I agree on the second opinion it's good that you're on your way there. As far as finding another doctor (or neurosurgeon), ask Amber's ped for a specialist they recommend or ask your own MD (or any family member's MD) as long as you trust the doctor you are asking for the recommendation from. I also agree that you have to watch all the doctors like a hawk esp. when you are in the hospital. It's sad that this is the current state of medical care but it is very important always to have a family member as a patient advocate, especially when someone is in the hospital. Take notes on everything everyone says and write up everything you know about the case and what has been said; take the write-up with you whenever you see any of the doctors. Make sure to formulate all your questions in advance before you see any of the physicians, write the questions down and bring them with you also. Best of luck and I hope things continue to look up for you and Amber. |
![]() "If nothing else works, a total pig-headed unwillingness to look facts in the face will see us through." General Melchett, Blackadder Goes Forth | |
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| audrey | Sep 15 2006, 04:15 AM Post #57 |
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Yes, i am a nurse, i work in adult and pediatric intensive care. I hope if nothing else i have got the message across that you definitely need to get a second opinion The difference between a neurologist and a neurosurgeon is that the surgeon does that and only that, he does neurological surgery. What the neurologist does is if there are any neuro deficits, this guy is like your new best friend. He is the one that can recommend ways to overcome any defecits that you may have, he can send you to therapists and he can predict better expected outcomes and how this will affect in long term care and long term implications that may occur. Now in regards to the lipoma causing the small bladder, it is not something caused directly but indirectly. i presume the growth was near the bottom of the spinal cord as this is the area that innervates the bladder ( the nerves that serve the bladder) and the perineal area- (your crotch for lack or better laymans term). if this area was effected for a few years and there is a lack of nerve function - something that is needed for proper bladder function- and the bladder is not allowed to fill completely and empty completely, like any other muscle it will either shrink or not grow properly. That is what i meant by this causing the bladder to be small, it is not a direct result but all neurological function is based on location, be it the spinal cord or the brain. The tricky part is that the bottom of the spinal cord sort of fuses into one peice and is not longer clearly different levels as it is near the upper parts of the cord. this area is called the cuada equina literally meaning horses tail and all these levels blend sort of like one would visualize a horses tail. i suspect her level of tumor was around L4 or L5 or S1 or S2. Be aware that if it is lower - S1 or S2, sexual function may later be affected. if higher - L4 and L5 you may see issues with hamstrings or lifting of the foot. The lower S levels may also affect bending and flexing the toes. That inward walk of the foot places it right about in the L5- S1 level, for a small child, anatomically, that is very small space and very close together. Getting a growth out of that area can be very very difficult, but may actually be a bit simpler now that she is a bit bigger...... does that make sense? If you can afford, get a second opinion from someone out of town, it never hurts to go to a teaching hospital only if you insist on getting the professor not the resident once you get there. If you are in florida, the closest and one of the best facilities for about anything in the country is Duke in North Carolina. Use your internet smarts and your rights as a patient (or as their guardian), obtain the records of your daughter, the old ones and the current ones, especially the operation reports. Good luck and perservere, it will be worth it audrey |
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| audrey | Sep 15 2006, 04:16 AM Post #58 |
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did i mention that she has the most beautiful blue eyes in the world?? audrey |
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| jayjay | Sep 16 2006, 05:03 AM Post #59 |
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Thanks Audrey... Although I am biased, she IS a BEAUTIFUL child. She looks like her Daddy, that's for sure! <_< And it's not just her looks, her personality is just unbelievable! She has been known to walk into a room, walk up to a complete stranger, sit on their lap, put her arms around them, and tell them she loves them. I know that's scarey, and I've told her NOT to do that, but that's just... well.... Amber!
She lights up a room when she walks in.
Your information makes perfect sense, although now I'm a bit concerned about the sexual function part... (oh wait, she's going to be a nun! :lol: ) Right now I'm taking baby steps, so I'm focusing on bladder and bowel control... The sexual part will come when she's 40. :lol: Today we had the first neurosurgeon visit. I have the MRI on disc, and it's really amazing, I can see the lipoma! I've never seen an MRI before, it is amazing! That picture was worth a million words! Basically, we consulted one the original surgeon's partners (he was out of town), and they've got the MRI, they know the story, and we'll be following up in a couple of weeks. But what he told us is exactly what Audrey said. It is in the S1 level... and you are GOOD, because he had her walk on her tiptoes around his office a couple of times... no problem there. I wondered why he did that AFTER he already looked at her feet. Thanks for the info on Duke. We can definately afford as many opinions as we feel necessary, money is not a factor, so anything you can advise is GREATLY appreciated... obviously, you know what you're talking about. You've amazed me with your knowledge. He said EXACTLY the same thing as you about the bladder... that lack of nerve activity can cause the bladder to be small and not contract properly. It seems to be a variety of issues in that little body of hers. I also got a copy of her chart from them today so we have all records of surgery, letters, etc. Now my file's pretty much complete, other than the urodynamics study, which I'll be getting next week. Now I'm ready for a 2nd opinion when it's time... Maybe we'll be taking a trip soon. First I want to see the actual surgeon and see what he says. In the meantime, I'm loaded with doctor appointments! Sounds to me like I will be needing a Neurologist as well. I guess that wasn't necessary since she was so small at the time. I've added that to my list of questions. Thanks so much Audrey... You are a wealth of information! I'll keep you updated. |
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| jayjay | Sep 16 2006, 05:11 AM Post #60 |
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Awwww... Thanks for the compliments... and thanks for the heads up about the meds. I've been reading about them, and someone else mentioned abdominal pain. I've been asking her frequently if she is in any pain, and she always says no. But this comes from a child who supposedly had such a severe infection she had to be hospitalized and never felt a thing. What she IS complaining about is sun sensitivity. It is a side effect, so I wrote her teacher a note, asking her to let her stay indoors during outside play time. What I don't understand is how in the world could this child go through no less than 3 urinary track infections that are supposedly so severe, and never feel a thing? There were no signs whatsoever that anything was wrong, other than the wetting accidents. No fever, no lathargia, no nothing! Happy as can be... Is this possibly a sign that she's not feeling THAT either??? Although a good thing that she was never miserable or suffering, it's a bit disturbing when she should have been deathly ill and she was running around like nothing was wrong at all. :hmm:
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| Jacaranda | Sep 16 2006, 11:27 AM Post #61 |
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Interesting that you should mention this JayJay, that Amber hasn't felt pain. When I was 13 I developed a life-threatening kidney disease, which basically involved my immune system turning on my kidneys and attacking them. Which involved progressively losing kidney function until it looked as though I was going to need a transplant. Luckily, I won this battle and kept my kidneys, and totally recovered with only very minimal side effects (slight scarring of my kidneys). So there's another positive story for you. However, my recovery happened after two years of being in and out of the hospital and VERY ill. However, except for one bout of pneumonia, I never felt any pain. In fact I seemed really healthy, except for tremendous blood in my urine (which was visible) and protein (which wasn't), you wouldn't know I was sick. When I was in the hospital, at one point I was running around having fun (I was in an all-girls ward of teenagers which was like a continous slumber party) non-stop. Odd but true. |
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| Deleted User | Sep 18 2006, 04:20 PM Post #62 |
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still keeping me fingers crossed. |
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| beatlechick | Sep 19 2006, 12:40 AM Post #63 |
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In Paul's Arms!
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JayJay, could it be that she has not known what it its' like to be pain free? She may not know the difference. She probably will later on in life but with her young age, she may not know the difference. My brother had a severe infection, don't remember what it was as I was not yet born, but I do know that he was in the hospital for months and incubated in the house for a few months afterwards but never felt the pain that he should have and would have had he been older. His infection was severe enough that he was not allowed to go out and play and was not allowed to exert himself. He would look at his friends playing outside and cry. While in the hospital he would race up and down the hallways until a nurse would see him and make him stop. |
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| jayjay | Sep 19 2006, 04:07 AM Post #64 |
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Thanks for your uplifting story Jacarada... stories like that give me hope. I appreciate your sharing here. What a scare and terrible experience for you!
I'm so glad it all turned out in the end. And thanks for your thoughts ILUVPETER... Very comforting for me at this very stressful time in our lives.Very interesting post, beatlechick... I have actually thought about that and wondered the same thing myself. But if you saw this kid, I think you'd agree that she doesn't 'feel' any pain right now. I know she knows what pain is, but she IS a very tough child. My hubby says she's as tough as a ten cent steak! Don't get me wrong, I'm not complaining, it's the only good thing about this whole mess that she's not miserable, so I thank the good Lord for that. I swear, I feel like I'm trapped in some horrible nightmare, or an extended version of The Twilight Zone gone bad. I want to wake up now! |
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| JanaW | Sep 19 2006, 04:42 AM Post #65 |
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When my daughter was little she had chronic kidney and bladder infections. She was always in the hospital or at the doctors because of them. The older she got, the better it got. She is 28 now and seldom has problems. I'm not sure what has happened or why, but it has certainly been a relief for us all. Hopefully Amber will also outgrow her problems. I'm keeping my fingers crossed for you! |
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| jayjay | Sep 19 2006, 04:11 PM Post #66 |
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This is the guy that did her first surgery. He sounds damned good, doesn't he? Dr. Glenn Morrison has been in practice in Miami since 1974, and has served on the hospital’s Medical Board, the Board of Directors (Vice President), and as the chief of surgery as well as participating in most of the hospital’s committees. While in medical school at Case–Western Reserve University, Dr. Morrison studied neurology at Queen’s Square in London. He spent two years at the National Institutes of Health conducting basic and clinical research before completing his neurosurgical residency at University Hospitals in Cleveland. Dr. Morrison was certified by the National Board of Medical Examiners in 1968 and by the American Board of Neurological Surgery in 1976. Dr. Morrison is a member of many medical organizations, and has served as the President of the Southern Neurosurgical Society, the Florida Neurosurgical Society, the Greater Miami Neurosurgical Society, and the Greater Miami Chapter of the American College of Surgeons. He is currently a Governor of the American College of Surgeons. Dr. Morrison has published and lectured extensively and has been recognized as one of the "Best Doctors in America" as well as the "Best Doctors in America – Southeast Region." Dr. Morrison is involved in the teaching program at the University of Miami and is a Clinical Professor of Neurological Surgery at the University of Miami School of Medicine. Dr. Morrison is one of only two neurosurgeons in South Florida to be certified by the American Board of Pediatric Neurological Surgery. |
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| Sandra | Sep 19 2006, 05:17 PM Post #67 |
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Glad your little one is home Janet. Do you know I honestly never noticed the Beatles tee-shirt she is wearing in the photo
Her lovely wide-eyed smile completely overshadowed it. I hope you find the right doctor for your daughter, one you can trust to guide you through what is always a minefield of differing opinions. |
| <a href='http://eapr-1/@0@Sandra@1@Edinburgh%2C%20Scotland@' target='_blank'></a> | |
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| JeffLynnesBeard | Oct 1 2006, 12:03 PM Post #68 |
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Administrator & Moderator
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Is there any update on Amber? How's she doing now, Jay Jay?
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| ...and in the end, the love you take is equal to the love you make. | |
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| maccascruff | Oct 1 2006, 04:38 PM Post #69 |
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Sing the Changes
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I've been wondering the same thing. How is Amber, Janet? |
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| jayjay | Oct 5 2006, 02:22 AM Post #70 |
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Awww.... you guys are so sweet... OK, this is the update. We've been to the surgeon who did her spinal cord surgery back in 2001 and we've followed up with the Urologist who saw her in the hospital. The appt. with the surgeon was the big one where we thought we'd be scheduling the surgery and things would start happening... Unfortunately we took 2 steps backward. But let me start w/ the Urologist. He said that her bladder is very very small and is just going crazy with spasms and contractions due to all of the UTI's (urinary track infections). He put her on a medication that relaxes the bladder, and it's working because she's only had one wetting accident this week, compared to 5-6 per day before. He also questioned her stools (I know - too much info, but pertinent), which was a surprise because her stools are really really large for a 6-year old. I explained that, and he said he kinda figured that, and put her on a stool softener. He said in cases like hers, the intestine tends to hold the stool longer than normal and it builds up and stretches, putting even more pressure on an already small bladder which is contracting all the time involuntarily. Well, as I kinda expected, it gave her diarrhea. So I decreased the dosage and am just watching her. So two meds from the Urologist and he's expecting surgery and at that time he says we'll see him in the hospital. He explained that we'll probably have to cathedarize her after the surgery because the nerves that control the bladder will be in shock for awhile and we'll need to do that to prevent further infections. Lovely, eh? I'm really looking forward to that! Ok, so the next day is the appt with the surgeon... he tells us that he's not satisfied with the MRI from the hospital (she wasn't sedated and was moving all over the place) and he wants to order another one. He says he's not 100% certain that the spinal cord is tethered and the MRI is not clear enough to make a definate determination. So now we're waiting on that MRI to be scheduled and that will tell us whether or not all these infections are due to the spinal cord or some other cause. When asked about the lipoma, he said he's seen only 2 other cases where that grew back and re-tethered at her age. He did mention it happens ocassionally during adolencense (something else to look forward to), or to children who are obese (obviously not Amber). But he said comparing the MRI prior to the last surgery with this one is not comparing apples to apples, so needs to get a better view. He also said that her cord is very low lying, and the MRI may appear it to be tethered, when it may not be, but also possible that it is. So, we're waiting on that to determine whether surgery is inevitable. In the meantime, she has now developed UTI #4 so she's on another antibiotic.
Actually, she's only been off antibiotics for 3 days since July. And just for icing on the cake, she now has 2 ear infections! Actually, that's what I went to the dr. for when this whole thing started - ear infections! I asked the pediatrician if there was something we could be missing - something that would make her little body not fight infections, and she said they did those types of tests in the hospital and everything was normal. I believe her because she always gets ear infections - she's on her 2nd set of ear tubes, so that's not unusual - just a pain in the ass!Not sure if I mentioned this before, but in the middle of this whole mess, she went to the pediatrician for her "WELL CHECK" (that's a laugh) and when she did the eye chart thing, she couldn't see! The kid needs glasses!!! I give up!!! But let me close with the one thing I am totally thanking God for... she's still as spunky, cheerful, loving, and as happy as she's always been! She's showing NO signs of any of this - whatsoever! It's so so so weird! Sorry to ramble, guys. Thanks so much for asking about her.
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| tagandolfo | Oct 5 2006, 02:29 AM Post #71 |
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Oh Janet. I really feel for you!!
But aren't kids amazing? When everything is going wrong for them, they help us! She sounds like an amazing little girl. Give her lots of hugs and you continue to be in my thoughts and prayers! I hope you find the answers and solutions soon. |
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| beatlechick | Oct 5 2006, 03:30 AM Post #72 |
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In Paul's Arms!
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Thank you for the update, JayJay. My continued wishes for a beautiful ending. May her life be long, happy, and full of love and joy. |
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| Rose | Oct 5 2006, 01:23 PM Post #73 |
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Well, here's another clue for you all, the Walrus was Paul...
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Jayjay- I'm glad your adorable little girl is still 'spunky, cheerful, loving, and as happy as ever'! I hope everything works out for the best. |
![]() "I'm in awe of McCartney. He's about the only one that I am in awe of. He can do it all. And he's never let up... He's just so damn effortless." ~ Bob Dylan | |
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| maccascruff | Oct 5 2006, 02:42 PM Post #74 |
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Sing the Changes
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Janet, the poor kid. But she sure sounds like a spunky one. Wishing you all the best. |
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| Queenbee | Oct 5 2006, 03:17 PM Post #75 |
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((((Janet)))) Sorry to hear the situation with Amber isn't over with. Even an ear infection should bring her down a bit. But I know what you mean when you say she is spunky......Amber is most definitely SPUNKY and a lively child. I hope the Dr.'s can get to the bottom of this. And how is poor Mommy handle all this? It has to be hard! (((L&H))) Judy xoxo |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| Queenbee | Oct 5 2006, 03:26 PM Post #76 |
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Sounds like you have a fantastic Doctor!!!!! |
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PEACE and love to my friends, Judy When the Power of Love over comes the Love of Power, the world will know Peace. -Sri Chinmnoy Ghose Till me meet again ~ I Love you Mike! You were one of a kind. | |
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| jayjay | Oct 6 2006, 01:06 PM Post #77 |
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Thanks for all your well wishes, everyone. Yes, Judy, I am very comfortable and confident that this surgeon will provide the best possible care for her. If, however, he tells us that surgery is not required and that it's a urology issue, we'll definately be getting second opinions because urology is saying it's the spinal cord. Just waiting on this damn MRI. I just got my pictures from the Ringo show in Miami (yeah, from 3 months ago ) and look what I found!: :lol: Edit: well that didn't work. I'll have to figure it out. :rolleyes: |
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| jayjay | Oct 6 2006, 01:15 PM Post #78 |
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(((Judy))) Yes, Mommy is a total basket case! :wacko: In fact, I'm headed to the Dr. myself next week... I'm just not myself - screaming all the time, bitching at everyone and everything, and my fuse is nearly non-existent these days, and my behavior is not normal. I waited nearly 2 1/2 hours for the ENT the other day, and I nearly threw a water-bottle at the window!! I had to walk out to calm down. My hubby swears I'm starting menopause. :lol: I think it's just stress. I'm way too young for menopause!!
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| iscreamer1 | Oct 8 2006, 09:56 PM Post #79 |
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Baking Fairy Cakes
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Stress is the suckyist thing there is. It can reek all kinds of havoc on the body, physical and emotional. Take care of yourself Janet, your baby needs you to be well. My husband is battleing depression right now and it's tough. It effects everyone. Stay strong! |
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| tagandolfo | Oct 8 2006, 10:11 PM Post #80 |
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Janet, I agree with Irene. Stress is AWFUL! I went through a really rough period last winter and it all most ended my relationship with my sister. It was just the stress being put on both us trying to deal with my mom and situations with her. I hope you can find some time to take care of yourself. Sorry to hear your situation Irene. I hope your husband gets better soon. |
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| jayjay | Oct 9 2006, 03:43 PM Post #81 |
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FINALLY!!! MRI is scheduled for next Wednesday, 10/18. Hopefully we'll get the answers we've been looking for!
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| jayjay | Oct 9 2006, 03:45 PM Post #82 |
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So sorry to hear about that, Irene. Hoping your husband will be better very soon.
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| JeffLynnesBeard | Oct 9 2006, 04:50 PM Post #83 |
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All the best to your husband, Irene. Depression is a debilitating illness and I've beaten it once myself, so I understand completely what you are both facing right now. |
| ...and in the end, the love you take is equal to the love you make. | |
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| MaccasGirl | Oct 9 2006, 05:16 PM Post #84 |
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Born To Be Wild
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I agree that stress and depression will take its toll on people. I see it happening with my husband, too, and it's probably why he gets sick all the time. I hope things get better for you soon, jayjay. And take care of yourself. |
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And in the end...The love you take..Is equal to the love you make. | |
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| Deleted User | Oct 10 2006, 06:41 PM Post #85 |
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As a dad, this sort of news just tears me up. I hate the thought of a child suffering just a scrape. I'll pray for Amber's well being and hope all goes smoothly. |
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| ogoble | Oct 10 2006, 08:55 PM Post #86 |
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This reminds me of when my baby girl was having breathing problems...you are in my thoughts & prayers.
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| iscreamer1 | Oct 11 2006, 02:49 AM Post #87 |
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Baking Fairy Cakes
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Thanks for your kind thoughts guys. |
Laughter is the shortest distance between two people - Victor Borge | |
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| maccascruff | Oct 11 2006, 02:45 PM Post #88 |
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Sing the Changes
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Hope the MRI gives you the answers you are looking for, Janet. I know all about depression. I've suffered from it on and off since 5th grade. It's not fun and makes me physically sick at times, too. It also causes me to miss work when I get in really bad shape. |
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| LITTLE LAURA | Oct 11 2006, 07:30 PM Post #89 |
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JayJay...how's Amber doin' ? Keepin' me fingers crossed for both of ya! BTW, guess who's got a urinary infection now, as well? :rolleyes: :rolleyes: :rolleyes: My 1st one since all that kidney crisis 2 1/2 yrs. ago. Got me nervous as I now only have 1 kidney meself since that emergency surgery removed the left one back then. MAN! WHATAPAINITIS!!! I've been trottin' to the biffy every 2 hours for 3 days now!!! YUCK !!!!! I need this like a hole in the head. :angry: :rolleyes: Tell Amber I can literally sympathize! ...speakin' of the above.....IGOTTAGO----NOW! Bye....... |
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| jayjay | Oct 11 2006, 08:53 PM Post #90 |
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Thanks all my dear friends... Reading your kind posts nearly brings tears to my eyes.
Amber is still enduring her 4th back to back urinary track infection; she finishes up the current antibiotic tomorrow, however, on Saturday or Monday I'll have to bring her back to the lab for a urine culture to determine if the 5th one has developed. So far she's gotten the next one no more than 3 days after finishing the antibiotic. In the meantime, we're just waiting for that MRI next Wednesday... waiting and waiting and waiting... once the MRI is read we should know whether it's the spinal cord causing these chronic UTI's. If it's not, I don't know what our next step is, except maybe another Urologist, but I do think it's the cord causing these problems. (((Laura))) I'm so sorry you're going through that! With only 1 kidney that must be very scary! I'm keeping you in my thoughts and prayers as well... Please take care of yourself and drink lots of water!
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| maccascruff | Oct 12 2006, 12:09 AM Post #91 |
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Sing the Changes
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I wish Amber didn't have to face the possiblity of another surgery on her spinal cord. |
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| jayjay | Oct 12 2006, 03:07 AM Post #92 |
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Me too, Linda... Me too! I'd put myself on the operating table for her in a heartbeat if only I could.
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| jayjay | Oct 12 2006, 03:10 AM Post #93 |
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Thanks, ogoble. Asthma is such a horrible scarey thing... I've been through that as well - with both kids! How old is your daughter and did she outgrow it? |
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| Dorfliedot | Oct 12 2006, 03:19 AM Post #94 |
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Beatlelicious
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i am sorry to hear about your dauther and surgery and such.. I prey she will get better.. |
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| LITTLE LAURA | Oct 13 2006, 05:08 PM Post #95 |
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Thanks JayJay.
I thought all this urinary garbage was thru once they removed that kidney. I forgot that urinary infections are women's # 1 so-called "minor" ailments. Minor?!!! HA ! WHOARETHEYKIDDIN' !!!I'm waitin' on test results meself, and as it's Friday 13th, I'm more than a wee might nervous..... Tell Amber I'm thinkin' of her. Oh dear....gottagoagain!!!!! IWANTMYMOOOOOOMMMMIEEEE....................
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| tagandolfo | Oct 14 2006, 02:06 AM Post #96 |
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Laura, I can sure simpathize with you on the UTI's. I get them often myself. It gets to the point where the first burn I am at the Dr's telling them what I need. Of course they never listen, I have to do the tests and yellow pills and 3 days worth of antibiotics waiting for the tests to come back.............it is definitely a pain. However, I am glad I get them and not my hubby, he has one kidney also due to cancer.....better me than him.. Take care everybody. Health is such a precious thing. |
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| LITTLE LAURA | Oct 14 2006, 04:34 AM Post #97 |
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I can relate to your Hubby's one kidney! My tests always come back either "negative" or "contaminated", no matter how sick I OBVIOUSLY may be! Even when they do it in hospital via sterile catheter. Go figure! The kidney they removed thru Emerg. surgery in June 2004, was SO full of infection and poisonous fluid that they told me it was about to explode! LITERALLY! Yet tests for mths. prior, kept coming back one of the above. :rolleyes: My body is SOOOOO weird. :rolleyes: :rolleyes: :rolleyes: |
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| Dorfliedot | Oct 14 2006, 04:56 AM Post #98 |
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Beatlelicious
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urinary infections I had a few months ago. how, I got it I don't know. |
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| LITTLE LAURA | Oct 17 2006, 05:39 AM Post #99 |
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Oh "joy" !!! [heavy sarcasm there]. :rolleyes: Now I have yet another thing to "share" with Amber. Now I too have to go to the Hospital for a Scan. My GP was worried enuff to call my Kidney Specialist, [the 1 who removed me left kidney 2 1/2 yrs. ago]. He called back while I was still at my GP's office. [now that's fast!], and told her--& therefore me--that given my history he wants another scan. Apparantly [I'd clean forgotten this], there was a small piece of 1 of the connecting tubes he just couldn't get at during the surgery; and as the major concern, the kidney itself, was completely removed, he made a judgment call that he didn't need to spend another hr. looking for one more tiny piece. It just wasn't worth the risk of that much more anaesthetic. Now he's worried that maybe there was a tiny bit of infectious fluid in it that's taken all this time to make itself "known". Lovely! Or...... It could also be a stone. YEOUCH!!! Or.......that litlle itty bitty piece has migrated & is now pressing on the bladder. Cute. :rolleyes: Bottom line is, he can't tell until the Scan is done. All that the tests have done so far is confirm there's some kind of problem in there.
..........can you divorce your own body? :angry: [rhetorical question there, guys ].ANYways, I hope Amber has better luck than moi! |
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| jayjay | Oct 17 2006, 02:23 PM Post #100 |
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Oh my Laura...
I'm so sorry you're having to go through this again! Hopefully it's something simple like a kidney stone (although I know they hurt, once it's passed, it's over!) and not something more serious. I am keeping you in my thoughts and prayers. When is your scan? Gosh, it takes FOREVER to get through these tests and get some answers! Please keep us posted on any news, ok? Amber's MRI is FINALLY tomorrow, BUT I just talked to the surgeon's nurse and we won't be able to see the surgeon again until NEXT Wednesday. A whole friggin' week of waiting for test results! :angry: |
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What a horrible way to spend your 6th birthday. Sending lots of positive thoughts so Amber gets well SOON!










how is Amber today ?? you have such a beautiful daughter - hope she is getting better
Glad you caught the mistake. I just went through a similar thing a couple of weeks back with my doctor and pharmacy. Each one blaming the other and me getting stuck with the bill! :angry:
:lol:


:rolleyes: :lol:
] 

Hoping your husband will be better very soon.


8:09 AM Jul 11