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Thread: Tyler's in the Hospital

  1. #1
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    Default Tyler's in the Hospital

    Took him to the ER yesterday cause his gagging and retching finally turned into vomiting. Cold sweats but no temp. He looks awful. They are culturing him for sepsis (odd with no temp), did a CT scan looking for blockage, blood work, chest X-ray. Had a really bad night so no sleep for either of us. My husband is with him tonight. I just got home. Need some sleep. Prayers please.

    Rose, they are bringing in infectious disease to see Tyler. Hopefully with some answers.
    Last edited by Tamie; 10-25-2014 at 01:20 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."

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    Sending prayers up for Tyler.

    Marcie

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    Default Praying ~

    ((((((Tamie))))))

    Praying for ((((((Tyler)))))), ((((((you & your husband)))))) ~

    While I wish that Tyler was not in the hospital, perhaps this is the best place for him to be at this point, so that a multidisciplinary team can thoroughly assess him and treat him to rid him of this infection. Good to hear that they're bringing in an ID doc, which I would expect since they are thinking he might be septic. Jon didn't have a fever initially, when he was septic.

    You must be completely exhausted. Try to get some rest and sleep. Be sure to eat something healthy and stay hydrated. Stress does a number on us, as you well know, and we need to take care of ourselves during a crisis.

    I will light a candle and begin continuing prayers ~ for answers, for treatment, for complete healing, and for strength for all of you.

    Sending tons of love, dear friend ~ please keep us updated if you can ~

    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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    Oh Tamie, I am so very sorry. This is such a terrible situation for sweet Tyler - he must be so tired and so must you be. Prayers going up now that they find the problem and develop a good treatment plan immediately. Prayers prayers prayers. With love and so much hope, Donna xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    I am sorry to hear this Tamie! Sending prayers....

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

    Prayers continuing for Tyler, you and your husband. Anxiously awaiting your update with positive news ~

    Sending love and healing energy ~

    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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    We brought Tyler home this afternoon. Nothing more the doctors can do for him. All the labs came out OK, so they are puzzled as to why this is happening. I think it is neurological. Calling his neuro tomorrow to see if he will order an EEG to check for sub clinical seizures. The ones we see are getting much worse by the day, so wouldn't be surprised that his sub clinical ones are getting worse too. That is the only thing that makes any sense. He is seizing, gagging, retching and drenched in sweat constantly, but no temp. His potassium and magnesium were low last night, so they gave him boluses of both. We know his kidneys aren't functioning properly. Not producing enough urine no matter how much fluids we are giving him, plus his UTI is drug resistant so having a difficult time killing it even with the IV antibiotics they gave him the past two days. If anything, his urine looks worse. Worrisome. They sent us home with morphine, ativan and zofrin to cover all the bases. At least at home, we can keep him more comfortable and better rested (us too). Watch and wait, watch and wait. Good thing we are good at that. Take him to see his PCP in a few days to follow (or sooner if things don't improve). Oh yeah, and he has a 7 mm kidney stone sitting in his right kidney. Been there for about 6 months and the urologist has done nothing about it. What a mess.
    Last edited by Tamie; 10-26-2014 at 04:32 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."

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

    I am so so very sorry, my dear friend.

    Two days on IV antibiotics isn't a very long time to allow for any kind of positive results to combating an infection. What was he given? What is the reason for discontinuing it?

    Is it possible that Tyler's seizures are related to the infection? To the antibiotics? To the pain of the kidney stone? To the fluid retention?

    Is it possible for you to get a second opinion from another urologist?

    You all must be so exhausted. Is there anyone, who can help you in caring for Tyler, or in any other way (preparing food, running errands, etc.)? Would you consider asking for a nursing service to help you? I just want you to get all of the help possible right now. You and your husband need to get sleep and nutrition, and that's tough while you're in watch and wait mode. I know.

    Sending you all love, healing energy and prayers, and wishing I could do more ~

    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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    I'm so sorry to hear this. Praying that this all gets resolved. Each step of diagnosis can take so long and it's so frustrating. Hope your at least getting a little rest at home.
    Mary Grace

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    Still gagging and retching. Doesn't matter what we put in his stomach or how much or little, within minutes he is gagging and retching. They gave him rocephin via IV for two days. The doctor just called and said to stop the Septra, cause it wasn't killing the infection. No surprise when his urine still looks like swamp water. The infectious disease doctor suggested two different antibiotics at one time to try and kill it. My husband is at the pharmacy now picking them up. They want us to continue with the morphine and ativan and see if that helps. The doctor also agreed with me that the gagging and retching is likely due to sub clinical seizures. I have an email in to the neuro and the gastro docs to see what they have to say. I am really thinking all this is a complication of Tyler's Ohtahara Syndrome or a progression of it. Not a nice thought. In the meantime, Tyler is pretty miserable. Sad 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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