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Thread: CN Central: October Updates

  1. #11
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    Trying to catch up on everyones posts. Prayers for all of my braintalk friends. Such busy lives everyone leads! I don't think I know a group of women who work harder than everyone here!
    WP_20151008_007.jpg

    Kathleen is doing great! We're half way there. 3 weeks left in the cast. We started PT and it's going really well. Some great exercises to keep her strong.
    Mary Grace

  2. #12
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    Thumbs up

    ((((((Mary Grace)))))) ~

    Excellent Update! So happy to hear that PT is going well. What a blessing! All of those pre-surgery worries were for naught, thankfully.

    Kathleen looks so happy in the photo. What sweet, pretty young lady she is. And what a trooper! Along with her mom and dad!

    Continuing healing prayers and looking forward to more positive updates!

    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. #13
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    Default Prayers for Poop Please

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

    Wednesday, Jon developed a temp of 101, had SATS in the 80s, two suctions, one breathing treatment, and no bowel movement. No BM, despite the 4 T of MOM, which I gave him Monday. So, I gave him 2 more Tablespoons of MOM Wednesday. Still no bowel movement as of today. So 2 more tablespoons of MOM today.

    By Weds. night, his temp, SATS and heart rate were normal and continue to be so.

    Yesterday, I injected pure glycerin into his stoma, with the hope of softening the stool waiting in the wings. No luck with that approach.

    When I explore with a Q tip into his stoma, I come up with stool on the Q tip, so I know it's there.

    Jim and I both listened for bowel sounds with the stethoscope. We heard grumbling (Jim heard it more clearly than I did, because I have hearing loss in my left ear). He said, "Sounds like thunder in his belly!"

    This is just unusual, since 4 T of MOM usually results in at least one day of major BMs. Then it stops again, but at least he gets something out.

    I told Jon that if he doesn't produce, we're going to have to hire itsy bitsy teeny weeny miners, with lights on their hard hats, and tiny shovels to do the job! He just grins at me. He knows how frustrated we are, but he can't do anything about his situation to help us. So, why I am a threatening him with tiny miners carrying shovels? It's a very long standing joke between us over 45 years of constipation. "Don't make me send in the tiny miners, Jon!"

    Gadzooks! What to do?!

    Jim will be visiting the drug store tomorrow to gather up an arsenal: fleet enema, Ducolax or a stool softener, glycerin suppositories, Magnesium Citrate (the $1.79 Solution, as we've named it in the past, known also as "Dynamite"), and anything else I can think of between now and tomorrow morning.

    I wish that I could give him prune juice, but he can't tolerate anything in his gut now. He's been on pre-digested formula for too long. I can't describe how not having natural and dietary options for Jon saddens me. I feel so boxed in and constrained with his care needs.

    But the Vivonex formula is keeping him nourished and here with us, so I should not complain.

    We've reduced his Dilantin, and a little bit less of Depakote, but we aren't seeing a lot of change in his energy level. That is probably because he is not excreting these meds through his bowel movements. He's holding onto them, so his levels are still probably too high, which is also likely causing his constipation.

    Did I just describe a vicious circle? I think I did.

    Prayers for Poop would be greatly appreciated, because, aside from nonexistent tiny miners, I really don't know what more to do. We'll try the other approaches, but it sure would be great if Jon would just produce something, anything, to get the ball rolling.

    Thank you. I know you understand, better than anyone else could, about how important it is to have regular bowel movements, and how concerning it is, when those do not occur. With a colostomy, bowels should be producing every day. There have been times, when that was the case for Jon, but not for a long while. So, when he's constipated, there is an additional concern now about the abnormality of that with a colostomy.

    At this point, his belly isn't distended, and he isn't complaining of pain. His vitals are normal. So I don't think he has an obstruction or adhesions or a vulvulus. I think the dam is backed up, and a huge boulder is blocking the escape hatch.

    So, that's our story up to the minute! Exciting, eh?

    Healing prayers on their way for you, your children, and your 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.

  4. #14
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    Sorry to hear about the poop situation. We sent in the tiny miners last night for Tyler. Worked like a charm (we keep them on hand, just in case). The Septra is constipating among other problems. Sure hope the miners work. Being that stoved up is very uncomfortable. Poop prayers heading up. Maybe a poop dance is also in order (kinda like the hokey pokey). Good luck.
    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."

  5. #15
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    ((((((Tamie)))))) ~

    Happy to hear that the tiny miners relieved Tyler! So, you have them on retainer, do you? Please do tell me the secret, because right now, our tiny miners seem to be on strike.

    And Jon has a temp of 101 and a firm, swollen belly.

    Jim brought home a cadre of arsenal, and we started with glycerin suppositories. I sent that glycerin rocket into Jon's stoma as far as it would go. About an hour later, Jon produced a rock hard marble-sized "turdlette." Next to it was the rest of the glycerin suppository. So I inserted it again, and we're still waiting for something to transpire.

    We're going to try 4 T of MOM again tonight. I'm not liking the Dulcolax ingredient, and Jim bought Miralax, but it concerns me too. I may go the enema route.

    Several nurses and a couple of doctors have expressed amazement that I've used a fleet enema in Jon's stoma. But, a doc ordered it for Jon in the hospital 10 years ago, and it worked, so who am I to argue?

    How is Tyler doing on the Bactrim? Praying no side effects and that it works.

    At least the weather is cooling down for us. Thank God. I don't know about you, but we got a thimble full of rain last week. Every where around us, lots of rain. Here ... 15 minutes of drizzle. And why are we hotter than the high desert? I just can't figure that out! We live about 20 miles from the ocean and get sea breezes!

    Healing prayers on their way ~

    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.

  6. #16
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    Exclamation

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

    Last night's MOM didn't work. Today, I tried a saline enema in his stoma. Jon's stoma returned a lot of the water, then nothing. Later, a small nugget was expelled. That's it. Not enough.

    Jon's legs are swollen, tight, with shiny skin. So we put his compression stockings on him tonight, with the hope that they will reduce his fluid. Perhaps that will assist his bowels in moving. I'm desperate for something to happen to unlock the poop! I'm constantly thinking, "What can we try next?"

    I need those tiny miners!!!

    I may end up calling Jon's GI, if we don't make progress soon. I'm not sure what he can do that we aren't, or what he would suggest, but he's a dear man, who cares for Jon and our family. So, it's worth a try to ask him.

    I fell asleep about 2 a.m. as I was praying for Jon to poop. I woke up before dawn, and I began the day praying for Jon to poop. And every moment in between this has been my prayer.

    This all started 2 months ago, when Jon had his UTI and pneumonia, and he took antibiotics, which bunged him up, and which knocked down his med levels, ending up in seizures, increased dosages, and now chronic, unrelenting constipation. I get all of that. I know why this is happening. I just don't know what to do to conquer it! To get past it, over this hurdle, and back to normal for Jon.

    Wouldn't it be wonderful, if we could just push a button and take a crisis break? Do you ever feel like you're on a merry go round, or a roller coaster, and you just need it to stop for a brief time, so you can get your bearings? I'm guessing you do. That's where I am right now.

    Clearly, life has other ideas.

    That's all the news from here for now. Please pray for poop.

    And I'll keep sending healing prayers for your children, you, your loved ones, and strength for us all ~

    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. #17
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    Sorry to hear Jon is having such a rough time. We have given Tyler Miralux daily for years plus glycerin suppositories. When they fail, we use enemas. No other combination has ever worked for us. Don't like having to use the Miralux, but with Tyler's history, that is the least of our problems. Continuing to pray for poop for Jon. He needs a breakthrough soon.

    Tyler is miserable on the Septra, which we expected. Cold sweats, stomach cramps causing pain, constipation, gagging and retching, moaning and groaning, grinding his teeth, seizures worse. He is a mess. Can't wait for this drug to be finished.

    Tired.
    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. #18
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    Rose, praying for that poop! I know all too well what lack of it can do to your body, and how helpless a feeling it can be. Even with a fairly open diet there was still nothing I could do for Kathleen when this happened. I LOVE your "tiny Miners" story! I actually had a picture of those tiny guys in my head ( I think it was the tiny miners from Fragle rock,not sure if you remember that show).Thanks for the giggle! Praying hard for that poop! It's so frustrating and exhausting. A break from that rollercoaster hopefully is coming soon.
    Mary Grace

  9. #19
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    Unhappy

    ((((((Tamie)))))) ~

    I'm so sorry that Tyler is not doing well on the Septra. I'm sure you are beyond exhausted. My prayers are continuing for all of you.

    The Miralax scares me for some reason. Polyethyleneglycol is the ingredient. I don't even know what that is. Magnesium. That I know.

    Jim went out today for Colace, but they only had tablets, no liquid. He brought home Mag Citrate, but it has the PEG (Miralax) ingredient in it, and I'm still hesitating. I just don't know how Jon will react to it. I just wanted plain old Mag Citrate, with nothing else added to it. Why is it so difficult to get what we want and need?!?!

    Our Drug Info link here at BT says that Miralax can be habit forming. I suppose that means that the bowels can become dependent upon a laxative, which is the risk with all laxatives, and it could possibly be the problem Jon is now having with not producing. It also says that an overdose of it can cause seizures.

    I literally don't know what to do at this point. I'm just afraid of giving him the PEG. I don't know why, but my gut is really cautioning me on it. And I'm wringing my hands over it. I don't know whether I'm overreacting, or I should trust my gut, which is my motto, of course. So, I guess I'll go with my gut right now.

    My boys used to take Docusate Calcium (which is the ingredient in Colace ~ although it uses sodium not calcium). The pharmacy ordered it for them, so I guess that's the route I will take tomorrow. I'll call and ask for them to order that as well as plain Mag Citrate.

    I wonder whether Jon and Tyler would benefit from a probiotic. I wish that I could feed yogurt to Jon. I know that all of the antibiotics he's taken has had a toll on him, and I wouldn't be surprised if he has a systemic yeast issue. That could also affect his bowels, big time. Same with Tyler, I would guess. My next search will be for an acceptable probiotic for Jon.

    Thank you for your prayers ~ More prayers for all of you and lots of hugs on their way ~

    ((((((Mary Grace)))))) ~

    We LOVED Fraggle Rock! Big Muppet fans here! My boys were born at the same time Sesame Street debuted, so they grew up with Muppets. Perhaps that is where I came up with the tiny miners for Jon. Very likely!

    I know you know the frustration and exhaustion, and I am just so glad that Kathleen has her urine and bowel issues sorted out now. And that she is managing so well with her cast.

    Thank you for your poop prayers!

    Our kids sure keep us on our toes! Ballerinas ain't got nothin' on us!



    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.

  10. #20
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    Rose, We love the muppets too. They never get old.
    We tried so many things to get Kathleen to poop! Most just caused her a lot of pain. Even the prescription medication. The only thing that ever worked for her was the Golytely through the NG tube an now through the cecostomy. I don't know if it's possible but a question for the Dr... can you give this through the feeding tube? It worked wonders for Kathleen when she got really backed up.
    Mary Grace
    Last edited by mg12061; 10-20-2015 at 06:04 AM.

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