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Thread: Tyler's at it again

  1. #11
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    Took Tyler to his swallow study yesterday. They gave him a thinned barium solution, which he promptly aspirated on. Tried a thicker consistency and had to stop the test. Too risky to continue. Sure explains the aspiration pneumonia he had last month. Have no idea what they are going to suggest to do. I know they mentioned a trach, which we are not thrilled with. Still waiting to schedule the EKG and check on his heart. Having a lot of seizures over the past two days. Something is brewing.
    Last edited by Tamie; 06-14-2017 at 05:30 PM.
    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."

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie, Tyler & Jerry)))))) ~

    We were terrified of a trache for Michael, and upon hindsight, we now wish we had agreed to it. Michael was fragile, seizing incessantly, like Tyler, and we were afraid that a trache would be too much for him.

    Now that we've had 8 years of experience with Jon's trache, we realize how much it would have helped Michael, and might have prevented his final septic pneumonia.

    I remember being terrified of the G Tube, when we agreed to have Michael's placed in 1999. It was because we didn't know anything about G Tubes. We didn't know anyone with a child, who had a G Tube. The unknown is always frightening, and it's natural to resist.

    The same was true, when we were asked about a trache for Michael. We knew nothing, and no one, who could explain it to us.

    With Jon, when the docs said he needed a trache, we agreed, because Jon is bigger, stronger and didn't have intractable seizures for 22 years. In 2009, it was temporary, and we had it removed. That was a mistake. Jon really needed that trache, as we would learn by 2011.

    Jon's trache has saved his life many times, and kept him at home and out of the hospital since 2012, touch wood, may it continue to be so.

    Being able to suction through the trache allows more clearance and less risk of aspiration and pneumonia. Many times, all we have to do is remove the plug, and Jon coughs out his secretions.

    A trache facilitates O2 administration, with a proper trache mask, instead of annoying canulas on the nose, or a mask over the mouth and nose. They can also rub and cause skin abrasions. Jon has a scar on his nose from a mask used on him in 2011.

    Trache care is easy. Jon's trache doesn't use an inner canula, so there is no daily sterile cleansing of a canula, which wasn't a big deal anyway. There are trache care kits with all of the necessary materials in them, and they are sterile.

    In Jon's case, we remove the 4x4 split gauze under his trache, clean with gauze and saline under his trache and on his trache, replace the gauze, and we're done. Once a week, we change the trache collar, which is also easy. Just hold the trache in place with one hand, remove one side of the collar, insert the tab for the collar, and repeat on the other side. Jim and I do it together, but one person can do it easily.

    Every 3 months, Jon's nurse visits to change his trache. But we can, and have done it in the middle of the night as an emergency. I always assist Jon's nurse, and we know that we could do it ourselves, if needed.

    We were trained, while Jon was hospitalized, in how to suction and care for the trache.

    The procedure generally takes about 20-30 minutes. Jon's first trache was placed by an ENT in the OR at the hospital. His second trache was placed by a thoracic surgeon at Jon's ICU bedside. IV Versed was administered.

    We've discovered that the trache is not scary at all. For Jon, it's a blessing.

    Unlike me, you know someone with first hand experience with a trache ... me. So, I just wanted to share with you what I've learned to help you and Jerry make your decision. I absolutely know how hard it is to make this decision, and I completely understand all of the concerns associated with it. I truly do.

    I will pray for Divine Guidance and for answers to help Tyler and you and Jerry.

    Please continue to keep us updated, Tamie.

    We Love 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. #13
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    There was a girl in my first grade class with a trache. I watched her nurse do trache care in class,very easy, like Rose said. Even the girl knew very basic trache care at 7 years old(the girl was mobile). It's not that bad.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  4. #14
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    We decided against a trach. Tyler has had this problem for the past 1 1/2 years with only one bout of pneumonia. Don't see the point. We are very diligent in what we do with Tyler and see no point in putting him through the trauma of surgery.
    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, Tyler, & Jerry)))))) ~

    I completely understand your decision.

    Prayers continuing ~



    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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