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Thread: Seizures & G Tube News

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Seizures & G Tube News

    ((((((HUGS)))))) To All ~


    Well, those pursed lips are definitely seizures. I was convinced this evening, when, again for the third night at 5:30, he had another episode, and squeezed my hand tightly. It lasted 2 minutes.

    He had about 5 of these seizures last night over a period of 6 hours, one time it lasted 7 minutes.

    This morning I called the doc to request a blood draw to check Jon's med levels, and I called the nursing service. Jon's nurse was unavailable, of course, and we aren't comfortable with nurses, who don't know Jon, drawing his blood, as it is quite an ordeal.

    Jon's nurse will be here Monday. Meanwhile, we're increasing Jon's med doses to protect him from a full on tonic-clonic seizure.

    Jon is peeing copious amounts, every 2-3 hours. The fluid in his torso is coming down. He's also producing in his colostomy bag now, which is a tremendous relief for him, I'm sure.

    On the G Tube Front:

    The GI doc called this morning, and he was quite nice to me. He was suggesting a button, but when I explained that Jon is on a feeding pump, he immediately said, "okay, sure, no problem." His office is ordering the tube, which Jon has currently, and when it comes in, the doc said that he would come to our home and place it. Finally!!!! We expect that to happen next week.

    So, Jon could sure use some prayers that the med increase will work to stop these new seizures. We are grateful for all of your prayers. Please know that they are returned for you.

    Love & Light,

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

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    Uh Oh. Hope he stops having seizures. I will be praying.

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    ((((((funnylegs4))))))

    Thank you so much. We're nearing the "witching hour" now, and I'm getting nervous.

    Love & Light,

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

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    And ... 6:00 ... seizure.

    BUMMER!!!!!!

    Jon doesn't have a neuro. We're going to have to figure this out on our own. I strongly suspect it is the fluids he is retaining, despite his voluminous output. But I actually have absolutely no idea.

    UGH!

    Love & Light,

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

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    Distinguished Community Member andromeda31's Avatar
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    ((((Rose))))

    Sorry to hear Jon is having seizures. :( Hope he can hold steady until his nurse comes on monday. I know how that is for blood draws! They always have one certain lady come down special for Caitlin now....I almost feel sorry for her (lady) though, having to try and poke into caitlin's tiny veins every week. But she is the only one who has gotten it without having to poke over 3 times. Glad to hear the tubing will be ordered...and house call to install it! Nice! So glad the doctor is making one thing easy for you for a change!! :) Praying you have a nice stable Sunday.....

    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!!

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    ((((((Lisa))))))

    Thank you for your prayers. He's holding his own so far, and is very sleepy/tired. I really think this is related to a malaise in the afternoon/evening. But I actually have no idea ... as I said above.

    Jon's primary nurse specializes in IV's and PICC lines, which is why she was assigned to Jon, because he is a difficult draw. His second nurse specializes in wound care, but she is also qualified to change Jon's trache. She is the only person who has ever drawn Jon's blood by just holding his hand on her own lightly. He just gazed up at her, and he didn't even flinch. It was surreal. I'm sure it won't be that easy ever again.

    The GI doc replaced Michael's tube at the hospital GI lab the day after Thanksgiving, 2002. He is one of the nicest, kindest, most caring docs I've ever met. Last year the day Jon came home from the hospital, the doc concocted an "extension tube" for Jon's Gtube and offered to bring it to our home to try it. Jon was sleeping, so Jim went to the doc's office to pick up the tubing. We ended up using it to drain his catheter, when he was bleeding last year in June.

    Because Jon is a palliative care patient, the GI doc is more willing to come to our home to change the tube. He understands how difficult it is on Jon to ride in the ambulance. He doesn't make house calls regularly, but he knows Jon's nurse quite well, as she took care of his brother, and so he might also be doing her a little favor. Plus, he has compassion for our family and our situation.

    We live about 4 miles from the hospital and 2 miles from his office, so it's not a long trek for him, and he likely do it during his "lunch hour." I should make him a nice lunch!

    I'll feel much better after Jon's nurse visits on Monday. She has a very calming effect on me, and I'm sure that she'll follow up, after she sees him. She has a crush on him. And he has one on her.

    How is everyone in your home doing? All over the bug? Hope so.

    Thanks again for your prayers.

    Love & Light,

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

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    So sorry... I hope he can hold his own till Monday. Do you sometimes feel like a "detective"? Trying to piece together everything. Many prayers...
    Mary Grace

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    Thumbs up Problems Solved!

    ((((((HUGS))))))


    Thank you all for your most awesome prayers!

    Jon's nurse swooped in, wearing her Wonder Nurse cape, and addressed all 3 of Jon's needs with ease and efficiency.

    First: the Catheter. Cleaned with Betadine, slathered with lubricant, balloon deflated and Jon peed over his cath, as well as into his drain tube, because he hadn't emptied his bladder for four hours. Slight return of blood. Re-inflated the balloon. Jon winced a few times through it all, but he didn't purse his lips.

    At long last, Jon is peeing continuously now! She did say that not having the cath all of the way into the bladder would cause the retention, as well as bladder spasms.

    Before this cath is removed and replaced in a couple of weeks, we will measure the cath, so that we can ensure proper placement with the new cath. Another lesson learned.

    Second: the Trache. Smooth as silk. Like butter. Old one out, new one in. And she said, "I'm sure that you and Jim could do this on your own, but I like coming to see you all, so feel free to call me when it needs changing again."

    Third: Blood Pressure: 100/70. That is good for Jon.

    Fourth: Blood Draw. I didn't wake Jim up, when the nurse arrived, because I thought she and I could probably manage on our own, and if we couldn't, I can always wake him.

    Jon was hardly resistant, although I did have to tie down both of his arms with soft restraints, just to be safe. She tucked Jon's arm under her arm, as I held Jon's hand. We told him to relax, and he did. Bing! She was in, and he forked over 3 vials. No problem!!!

    Jon absolutely loves this nurse, and he looks at her so sweetly. He has a crush on her; it's quite apparent. And she just loves him to bits. She talks to him, asks him about his movies, the Lakers, football, tells him how handsome he is, and how she loves his blue eyes. And he just melts.

    Watching him gaze at her misted up my peepers. I said to her, "You could probably do surgery on him without an anesthetic, and he wouldn't mind!"

    I don't think we'll ever change his trache on our own. That's the primary reason we can ask for her to visit. Or to fill in when Jon's primary nurse is unavailable. I wouldn't want to deprive him, or her, of their tender moments together.

    I walked her to her car, hugged her and thanked her. Then I did a little Dance of Joy on the street, as a neighbor drove by and looked at me like I was a bit loony. I am. Two weeks of unrelenting stress with Jon's catheter. Now it's fixed.

    Jon already looks and behaves like he feels 100% better. No doubt he does!

    He hasn't pursed his lips today, so we're hoping and praying that he will not, now that his cath is in the proper place.

    So, thank you again for your wonderful prayers, love and support. We return it to you in abundance.

    Love & Light,

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

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    Best news I have had all day. Thanks for updating us on your handsome son. So glad to hear Jon is feeling better and that you all will get some much needed rest tonight!
    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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    ((((((Tamie))))))

    Thank you! So happy to see you here! How are you? How is Tyler? How about an update?

    Miss 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.

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