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Thread: Update on B

  1. #11
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    So glad to hear the good news! Hope everything goes well at home with the g-tube and that there are no return trips to the hospital!! :)

    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!!

  2. #12
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna, Mary & Lisa))))))

    Thank you so much for your prayers and support through B's ordeal.

    B's mom told me yesterday that this is the first time in 25 YEARS that B has been in the hospital! I think that is astoundingly wonderful!

    She's getting comfortable now with the G-tube and realizes that she is not going to harm him in any way. She has the new Kangaroo pump, where we still have the old Patrol pump. Our Kangaroo will be delivered with this month's formula and syringes. I'm going to ask B's mom to teach me to use it!

    Thanks again, dear friends!

    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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    I just got home from S. Carolina last night so am still catching up on all the news. So thrilled to hear B is home and mom is getting some much needed rest. Rose, she is so lucky to have you as a friend to advocate for her and B. Thanks for the continuing updates on this precious family. Oh, before I forget...when Tyler seizes silently, he sweats gallons. Some nights his face, hair and clothing are soaked. Out comes the diazapam, which at least helps to take the edge off the seizures. Just thought I would throw that into the mix.
    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."

  4. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie))))))

    How was your visit? Please update! I hope you had a great time.

    Thank you for sharing about Tyler's sweating. I am certain that is the cause of B's sweating, and today, B's mom finally came on board with me on that opinion, where she had been trying to blame it on the antibiotics at the hospital and the formula he's been given.

    B's Mom called me today, and she sounded so ragged, exhausted, fearful, and emotional. Things are not going at all well.

    B has been vomiting. She thinks he is reacting to his food. I think he's seizing. He really hasn't stopped seizing since this whole ordeal began.

    The Keppra isn't working. He's getting 1500 mg/day, and he's been on more and on less. Nothing has changed.

    She told me that his secretions are unreal, and she is suctioning him constantly. Again, she wanted to blame that on his formula. But I told her that I believe he is seizing constantly and that is the cause of these excessive secretions.

    I encouraged her to call her neuro again (she had called in the morning, but had no response) and that she tell the neuro that the Keppra isn't working, ask what other medications can be tried to stop his seizures, and demand his help. I told her to use the word, "status" repeatedly.

    Our primary care doc will probably tell her to take B to the hospital, but she said she won't do that, because they have done nothing for him with regard to his core problem: Seizures. She is so correct there. No one has helped B, not at the first hospital, the hospital he ended up in twice, and especially not the acute care hospital.

    She does have home health nurses, but they can only do so much. She is at her wits' end.

    I'm going to start a new thread about the heart of our conversation today. It's something all of us must ask ourselves and face at some point.

    I'm so glad you are home safely, Tamie. Always wonderful to hear from you, dear friend. Sending prayers that you and Tyler and family are all well.

    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.

  5. #15
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    Tyler threw up formula from day one and lost ground on it for two years. They had to keep changing the brand to try and find one he could tolerate. He lost weight consistently even though the docs increased the amounts of his feeds. B may need a slower feed until his body accepts the formula or he may never tolerate the formula (which is why we started real food over the canned). Your friend might want to try baby food and see if the vomiting stops or at least pureed single foods as a test. I know most doctors cringe at putting real food in a mic button, but it worked for Tyler and he was 12 when we started using it.

    Our trip was hectic, but fun. We saw many of S. Carolina's sights, but keeping four children (from 3-11 years old) all entertained and happy was a constant challenge. It was just great to spend time with my daughters and grandchildren. Sure wish there was a way to take Tyler as well, but there isn't an airline out there that could accommodate his needs. His mom only gets to see him once a year since they moved back there, so it is hard on all of us.

    We go to court on May 1 for the Conservatorship. The county sent out a lawyer to represent Tyler and she had to come and interview him. What a joke and a huge waste of money.
    I told them to let me know what he had to say. He has to appear with us at the hearing and the lawyer didn't think his wheel chair would fit into the courthouse elevator. Guess the judge will just have to come down stairs! This ought to be interesting.
    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."

  6. #16
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    Good Lord, Tamie. Unbelievable! Continued prayers for B and his dear Mom. xD
    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


  7. #17
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    ((((((Tamie))))))

    Sounds like your visit was bittersweet. Next time get all of them to come out to see you! I'm glad that you got in some sight seeing. It's been a long time since I've been there, but I do remember that South Carolina was lovely.

    This Conservatorship stuff is unreal. What a fiasco! I'm going to presume that the "interview" with Tyler was to make sure that he was not able to take care of his own needs or make his own decisions. Just in case you were lying about that, because you know that we're all scam artists and frauds. UGH! Know the feeling. "He is permanently disabled. What part of 'permanently' don't you understand?" I have said that so many times through the years.

    A courthouse, which can't accommodate a wheelchair, is in violation of the ADA! Go for it, Tamie! Oh, man! I would be calling the media for this one! I want to see you on the evening news:

    Reporter: You're here to get Conservatorship for your grandson, for whom you've provided care throughout his life. What happened today in court?

    You: I have no idea. We couldn't get in!

    Oh my goodness! Six o'clock news, sweetie. I expect to see you there!

    About B and His Mom

    B's mom called today to tell me that she fed B orally today ~oatmeal and quinoa. He kept it down. No choking. She's giving water via the G tube, and she's hoping to continue to feed him orally, but she is prepared to blend his food and thin it to give via his G Tube. I sent her websites and information, and she was quite relieved to understand better how real food can be given by G Tube.

    She also, on her own, decided last night to give B Vimpat, which she had on hand from the previous trial of the drug. B slept most of the night after the Vimpat dose, and seized about 4 times during his sleep. But he didn't sweat, and he didn't have breathing difficulties, and he awoke refreshed and able to eat. She discontinued the formula last night.

    Her mood was greatly improved, and she is hopeful. Our conversation ended, as her home health nurse arrived, so I'm very grateful that our nursing service is providing her with so much support.

    We just keep praying that B will tolerate the real food, and that the Vimpat will help to control his seizures.

    Thank you all for your support for B and his mom. They truly appreciate your prayers and concern, as do I.

    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.

  8. #18
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    Wow, I hope it goes well. Does your friend have support with the vimpat? I'm so glad that she had the vimpat on hand and that B is better, but is your friend getting the doc support now that they are home? Nurses are helpful (necessary!) but not the same as a specialist who commits to being involved in a community home hospital situation like you friend. Just wondering.... I will pray every day for your friend and B until everything is altogether stable and they don't need my prayers anymore :) x
    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


  9. #19
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    The one nice thing (among many) I found with blended food is that you can discontinue the night feeds and give the stomach a much needed rest without losing calories. Just be sure your friend uses an extension (we use a 12") and does a water rinse when she is done feeding a meal. I found out very quickly, that if you leave any food in the extension, it turns to concrete. Not fun to clean out. We have put food directly into the mic button in a pinch, but it causes the seal to weaken and the mic will eventually leak.
    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."

  10. #20
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    Thumbs up Improvements with Changes

    ((((((HUGS TO ALL))))))

    Donna ~ Our primary care doc (who is Jon's and B's doc) is more than willing to do house calls, but his medical group put the kibosh on that. He is available by phone or internet. Our home health nurses communicate directly with him. As far as the neuro goes, no house calls, and evidently he's fairly lax on the phone call returns. (For the record: Jon does not have a neuro, as none in our area will accept Medicaid.)

    More responsibility is being foisted upon our overworked, underpaid home health nurses. Our nurse told us that their instructions are to do all that can be done for the patient at home and not send them to the ER, unless it's life-threatening. How's that for health insurance issues?

    B's mom only gave B Vimpat one time to stop the incessant seizing. Evidently it worked, as his seizures have now lessened in frequency and intensity.

    Tamie ~ Thanks for the tips. B has a 3 inch PEG currently, not a Mickey yet. Jon has a 12 inch G Tube, so I'll be no help to B's mom if she goes with the button.

    So far, B's mom has been feeding B orally, and he seems to be tolerating it without choking. It takes her a long time to feed him, as she waits several minutes after every bite. His food is pureed. She is giving water via G Tube to keep up his hydration, but she says the water seems to be backing up on him, perhaps similar to what is happening to Jon. In that case, I suspect that he might be having fluid retention (as Jon does).

    She did take B in to see our primary care doc, who looked him over thoroughly (he's a great guy) and gave him a referral to our favorite GI doc. The GI doc is the one, who will give her the best advice.

    She is going to buy a Vita Mix, so that she can give him the blenderized diet via G Tube, as well as orally. I fear that he's not getting enough calories.

    And, yes, her goal was to get him off of the pump and formula, so he could have gut rest at night. Jon gets 6 hr/day gut rest to accommodate his Dilantin, which requires his food to be off 1 hour before and after each dose.

    No more vomiting and less seizures since he's off of the formula. I wouldn't doubt that something in that formula was aggravating his seizures.

    Now, they're both getting more rest and sleep, which is a wonderful thing.

    Also, B's mom has made a decision.

    She doesn't intend to take B back to the hospital again. Regardless. She feels that nothing was done to help him, and much of what was done to him harmed him. I can't disagree with her. Especially the acute care hospital.

    She explained this to our primary care doc, and he told her that he would support whatever decision she made. Just as he did with me, 10 years ago, when I called him from the ICU nurse's station, sobbing about our decision to release Michael. Our doc was a brand new doctor then, just starting his practice. Michael was the first patient he lost. He was very affected by Michael's passing. He missed Michael's Memorial Service, because his wife had a flat tire, and he rescued her, as she was in another county. I lost count of his profuse apologies through the years.

    Last week, when B's seizures were spiraling out of control, and he was vomiting, B's mom was so distraught. Her sister had said to her, "You're doing this for yourself, not for him. You're putting him through all of this for yourself."

    B's mom sobbed, and I cried with her. She said that B's eyes convey to her that he doesn't want to go through this any more. I can certainly believe and understand that. He is so weak and worn out.

    She wept, "What am I going to do? I can't let him seize all of the time. I can't let him vomit and choke on this formula. I can't let him starve to death. I have to keep trying to help him."

    The next day, she told me she'd given the Vimpat and that she was able to feed him orally. Once again, she had hope.

    But she knows. She knows that a body can only withstand so much, before it gives out. And she knows that whatever the hospital does or doesn't do for B will not change his condition or be some miraculous cure. She knows that the safest place for him, where he receives the best care, is in his home with her.

    For now, he is on an upward trend, and he has two fantastic doctors, and several good to excellent nurses, and with that support, I believe that she will create the most healing environment for her boy. Her devotion to him is boundless, and that includes understanding when it is time to let him go.

    I am beside her every step of this journey. I know the way.

    Thank you all for your continued prayers for B and his mom. They are so deeply grateful.

    I 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.

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