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Thread: Tyler's at it again

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    Default Tyler's at it again

    A week ago today we spent the night in the ER. We knew Tyler wasn't feeling well but there wasn't anything specific in his symptoms. Low grade fever for several days, not sleeping well, sweating profusely, seizing, hours unconscious daily, very tachycardic. Same ole, same ole. Then he started vomiting. I listened to his lungs and they sounded wet on top of his racing heart. To the ER we went. Pneumonia in the base of both lungs. The docs gave him two breathing treatments and put him on two antibiotics. They wanted to admit him but we ardently refused and brought him home at 4:00 am. We were up for 28 hours and were exhausted. Tyler has been on the antibiotics for a week and nothing has changed. We'll see how he is doing once we finish both drugs. He is unresponsive much of the time, though today he started moaning at 3:00 am and has been very uncomfortable. I prefer him unconscious. Much easier to watch.
    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, Tyler, & Jerry)))))) ~

    Oh, I'm so sorry that Tyler has pneumonia, along with all of his other issues. Do you think that he may have aspirated, when he vomited?

    Do you have a nebulizer at home for breathing treatments? Suctioning?

    Since you haven't seen improvement, perhaps Tyler should change antibiotics. Might be worth a call to his doc, or the Infectious Disease doc would be best.

    Sending many healing prayers and prayers for you all to get some rest.

    Please keep us updated ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Thanks Rose. Tyler has had pneumonia about 17 times over the years so we have the equipment. The breathing treatments in the hospital made a huge improvement in his breathing. With the AD episodes causing wet lungs, I'm surprised this hasn't happened before this. The doctors frustrate me to no end. His Primary Care doctor wasn't sure the antibiotics would even help Tyler. Today is the last day of the zpac and we have another 5 days on the Ceftin. The AD is complicating matters as usual. Tyler is not happy these days.

    How is Jim doing? I continue to pray for a miracle.
    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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    I'm so sorry Tyler is sick. It's scary that he stays unconscious for hours. Praying he gets better soon.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    ((((((Tamie, Tyler, and Jerry)))))) ~

    Pneumonia can be a real challenge to manage at home, even with all of the right equipment. And if the right antibiotics aren't given, that makes recovery even more difficult. Did the ER docs do any sputum cultures?

    How are Tyler's SATS? Is he able to cough on his own, when he's "awake?"

    You must be literally worn out. I keep praying for answers and for help for Tyler's AD. It's so unfair that your sweet young man suffers without help, and that you and Jerry are left to feel even more helpless in caring for him.

    Lots of prayers on the way, as always, dear friend ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Doctors didn't do a whole lot Rose. Took an xray and did blood work. I had to remind his Primary Care doctor to listen to his lungs. Oddly enough, Tyler is barely coughing. Yesterday was the first day without a temp and he slept fairly well last night. Done with one antibiotic and a few more days on the second. Still sweating but that could also be from the AD.
    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)))))) ~

    Diagnosed with pneumonia, but the doctor doesn't think to listen to Tyler's chest. I'm so sorry that you don't have a better caliber of physicians caring for Tyler.

    It sounds like Tyler's improving, and I pray this is the case and will continue to be so.

    Many prayers continuing, as always ~

    Love & Light,

    Rose
    Mom to Jon, 47, (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 to hear this! I pray that maybe he's improving some. Pneumonia is such a scary thing...
    Mary Grace

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    Saw Tyler's neurologist today. He's never very uplifting but bends over backwards to try new things for Tyler. Talked to us about the unconscious spells and has no idea what is causing them, but suspects it's the AD episodes. Ordered an EKG to check out Tyler's heart. Wants to put him on a beta blocker to try and slow down his heart rate and address the profuse sweating episodes and has ordered a swallow study to see if Tyler is aspirating on his saliva. Then he discussed the possibility of Hospice Care and suggested that Tyler will likely pass away from either pneumonia or aspiration. He told us that Tyler can't keep up with these episodes and not have some dire consequences. He looked at some of the video clips I've taken of Tyler seizing and having difficulty breathing through them, choking and gagging as he tries to catch a breath. Actually looks like he is having a stroke because his face pulls to the left during the seizure. It was a pretty depressing appointment.
    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, Tyler, & Jerry)))))) ~

    I'm so very sorry. I will continue to pray for answers with the testing and the beta blocker.

    Do you regularly take Tyler's SATS? My thought is that Tyler might benefit from O2, particularly during the AD episodes and seizures. O2 might ease his breathing and reduce his gasping. That is something a hospice nurse might recommend.

    Please know that we surround you with prayers and healing energy, and send our love as you travel this path in Tyler's challenging journey.

    Love & Light,

    Rose
    Mom to Jon, 47, (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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