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Thread: CN Central: October Updates

  1. #21
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    ((((((Mary Grace)))))) ~

    GoLytely is polyethylene glycol plus electrolytes. Same ingredient in Miralax, and in the Mag Citrate Jim bought yesterday. I just called our pharmacy. Turns out that they do have plain Mag Citrate (Jim just couldn't find it on the shelves), and they are ordering docusate sodium for Jon. So that will be our next plan of attack.

    I was searching last night for a new artificial Christmas tree and found one that I liked. I emailed the company to ask what material is used to make the tree. Answer: Polyethylene!

    https://en.wikipedia.org/wiki/Polyethylene

    I'm at a loss trying to figure out how plastic can be used as a laxative!

    At least Jon isn't demonstrating pain, and thankfully, his belly is not distended. I think the stool softener is probably what is needed, but we won't have that until tomorrow.

    The journey to poop continues ...

    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.

  2. #22
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    Thumbs up We Have Poop!

    ((((((Hugs to All)))))) ~

    The latest installment in the poop saga with our Mystery Man.

    Our pharmacy ordered the docusate for Jon today, and it will be in tomorrow. The pharmacist said that they do have plain old Mag Citrate on the shelves, which evidently Jim missed while perusing the assorted options in the laxative aisle.

    We decided to try another Fleet enema, and it was successful in producing 2 fairly good sized nuggets, along with alot of water. It's difficult to gauge how much is going in, and I didn't want to overdo it. Because, truthfully, I've only done this 3 or 4 times in the last 10 years. And, I don't think that it is actually a widely accepted practice in the world of colostomies. But, it has worked twice, so we're extremely grateful.

    I do think that the stood softener (docusate) is the required internal option, given the consistency of the nuggets he produced. As I said before ~ a boulder is blocking the dam's escape hatch.

    Now he is producing more gas into his colostomy bag, which is full of liquid, so we're teasing him that he sounds like he has a bubbling cauldron! Well, it's a Halloween reference, anyway!

    Unfortunately, his production wasn't enough to help reduce his lethargy and misery. But it's a start, and we can at least go forward from here.

    Thank you for your prayers! They are working! And we feel your positive energy flowing to us to help Jon. Bless you all.

    And many prayers going up for all of you ~

    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.

  3. #23
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    Thank goodness you got a little poop Rose. Sounds like an awful ordeal. :(

    That pic of Kathleen is awesome! She is so cute and pretty!

    As for me I continue to do outreach work with my films. http://cripvideoproductions.tumblr.c...-self-advocacy October is officially outreach month for me LOL. Still stumped as to what to do for Halloween though….
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #24
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    Thumbs up Meet the Tiny Miner

    ((((((Hugs to All)))))) ~

    You're lookin' at her! Yep, it's ME!

    The docusate was full of red dyes, polyethylene (it's in everything), and the mag citrate bottles were the same. So Jim made repeated trips to pick up these options, which we didn't want to use.

    I tried another enema yesterday evening with no result, as the water kept spurting out of his stoma. So, I decided that one last time I'd try the full dose of MOM at 11:30 last night.

    This afternoon, Jon started producing. First a boulder on top of his stoma, which I gently removed using my tiny miner shovel, a Q tip. After a little more shoveling, more production. It's continuing, without shoveling, albeit not like a volcano erupting lava. It's slow going, but it is definitely constituting a good bowel movement, given the waiting we've had for this to occur.

    We rejoiced with Jon, giving him all of the credit, of course. "Yay, Jon! Look what you've done! Way to go, Buddy!" with fist bumps all around. We did a modified dance of joy, since we're all a bit weary and aching here these days.

    ((((((Tamie)))))) ~ please check in and let us know how Tyler is doing, if he's off Septra, and how you and your husband are.

    ((((((funnylegs4)))))) ~ Congratulations on your outreach work ~ that is so wonderful. Halloween costume? Hmmm... how about going historical? Anything from a flapper to a hippie. You have a vivid imagination. I'm sure you'll think of something clever.

    Thank you all for your prayers for Jon and for us!

    Many prayers being said for all of you and your children, families, and loved ones ~

    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.

  5. #25
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    Hi Rose. Glad to hear the poop is flowing, albeit, slowly. Better than not at all! Tyler is still miserable. Seizures nasty, cold sweats continuous, still grinding his teeth in discomfort. Last Septra pill is tomorrow morning (happy dance time), then we wait four days and take in a new sample. Urine has been pretty clear until this morning. Back to being hazy. Hope that is no indicator of more problems.

    My husbands A-pap arrived yesterday, but he got home too late last night to set it up. Hoping it will give him some much needed, restful sleep. I'm doing OK. See my cardiologist next month, so we will see what he has to say.
    grandmother of Tyler (22): 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."

  6. #26
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    ((((((Tamie)))))) ~

    I'm so sorry that Tyler is still miserable. How I wish for him and you and your husband that these UTIs would end permanently, so that he can mend and recover. I feel so badly for you all.

    Prayers that you all get some rest and sleep, and that your husband's A-Pap will work wonders for him. Remember to take good care of yourself, Tamie.

    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.

  7. #27
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    Was up pretty much all night with Tyler. Woke up at 11:00 shrieking and wet. Changed him, gave valium. Woke up again at 1:00, shrieking, gagging and retching, seizing, sweating buckets. My husband changed him again, put a dry t-shirt on him. We gave him Zofran and Motrin. Kept it up until 3:30. Gave him more Valium which just made him very fluidy. Started choking with the gagging and retching. Changed his shirt for the third time. Soaked with sweat, but no temp. This kept on until 5:00 this morning. He finally fell into an exhausted sleep. We are not giving him the last pill this morning. We are done. Just praying what he got killed this miserable bacteria for good. Taking a new sample in on Tuesday.

    Hoping Jon has had a really good poop and is more comfortable. These young men suffer more and endure more than anyone should have to.
    grandmother of Tyler (22): 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."

  8. #28
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    ((((((Tamie)))))) ~

    What a horrible night for all of you. I'm so sorry. Joining you in prayer that the Septra knocked out the UTI, and that there will be relief ahead for your brave and beautiful Tyler.

    Tons of healing energy and prayers on the way for all of you ~

    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.

  9. #29
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    Tamie, so sorry to hear this. Prayers that Tyler is better today.
    Rose I hope The flow of poop continues!
    Mary Grace

  10. #30
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    Heading to Urgent Care. Tyler had another rough night and is struggling to breath. Sounds like he may have a nasty sinus infection. Just what he needed, more antibiotics!

    Hey Rose, any poop yet? Still praying for it.

    Thanks Mary Grace. He can use all he prayers he can get right now.
    grandmother of Tyler (22): 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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