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Thread: Kathleen update

  1. #1
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    Default Kathleen update

    Thanks for all your good thoughts and prayers. Kathleen was admitted on Friday for a bowel clean out. Golytely through an NG tube. So she's feeling pretty good at the moment. I did get some time to talk with ehr GI Dr. locally and he thinks that Kathleen would do really well with the surgery. (apendicostomy M.A.C.E). It will make her life so much better. She's been constipated since she was very young but in the past 2 years it's invaded every part of ehr life and she feels awful most of the time. she can't go swimming or plan anything she misses a lot of school and is telling me now that she's fustrated. She will write a note to her TA at school telling her "I have to go home". Over the past 2 years we've tried every medication they have for this in all different doses. I'm nervouse but excited to see her happy and energetic again. I've almost forgotten what that was like. I told ehr we were going to get her tummy fixed for good and she said "I'm so excited". The good news is we will be able to have it done locally and not have to go to Boston. It will be nice to have family and friends around us. I'm just waiting to hear from the surgeon and set up an appointment to talk with him/her. Kathleen went back to school today but she will only have half a day. We live in upstate NY so everything is closing in preperation for Sandy. Got my batteries, flashlights, water, etc.
    Mary Grace

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    Glad to hear there is hope for Kathleen's bowel problem. Our kids really need a break! Stay safe through the storm and check in when you are able.
    grandmother of Tyler (24): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    ((((((Mary & Kathleen))))))

    So happy for Kathleen that she is feeling better after the bowel cleansing. And that she is anticipating the procedure, which will allow her the freedom she's been missing for too long. An added plus that it can be done locally. It does mean so much at those times to have family and friends supporting you. I'm sure that you will keep us updated on the surgery scheduling.

    My prayers are with you to keep you safe during Sandy. I've been watching the Weather Channel, and she looks mighty fierce. Batten down the hatches!

    Love & Light,

    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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    Oh, thank goodness that Kathleen is feeling better! Stay safe all my dear friends in the storm's path!
    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


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I am so glad the appointment went well! Hope they can get the surgery scheduled soon...glad Kathleen is on board for it all. That will make it all so much easier! :) ((((hugs))))

    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!!

  6. #6

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    How did you make out with Sandy?? I hope all is well. We just got our power back after being out for 8 days. It was a very long and cold 8 days.

    Marcie

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    I'm extremely thankful that we were spared. Just some rain and wind. Wow 8 days I can't even imagine! That must have been awful.

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    How is Kathleen? Do you have a date for the surgerY?
    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


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    The clean out gave her a few good days and then back to the same old stuff. not going for several days then not going enough. We even added 5 capfuls of Miralax 2x a week to the Amitiza. We almost admitted her again yesterday for another cleanout but she finaly went, not enough but she did feel a little better. She had been crying for 2 days with a warm towel on her belly and taking hot baths. We have an appointment with the surgeon on November 29th. I know we've been dealing with this for 2 years but these next 3 weeks will feel like forever! At least I'll have time to write down all my questions. I'm very nervouse about all this but I want her to have her life back.
    Mary Grace

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    ((((((Mary & Kathleen))))))

    I'm sorry that the clean out didn't last as long as you had hoped, or at least jump start her system to producing on its own.

    Shall we pray for a cancellation, so that the surgeon can see Kathleen sooner than Nov. 29?

    Of course you are nervous about the surgery, but you have tried everything, exhausted all options, and surgery appears to be the solution to giving Kathleen back the freedom she yearns and deserves to have.

    Have you searched the internet for discussion forums about the procedure? Perhaps there are folks out there talking about it, whose experiences will give you a better understanding of it.

    We're here for you, to support you through this, so please don't hesitate to post about your concerns. We don't have experience with this specific procedure, unfortunately, but we're all familiar with assorted surgeries on our kids, so we can relate to what you're facing.

    Love & Light,

    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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