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Thread: Keppra and Increased Seizures

  1. #21
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    Tyler yanked his ng tube out once and our dog got tangled in it and ripped it out. Not fun waiting for hours in the ER for someone to replace it. Hope your friend reconsiders the g-tube.
    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. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up She's Going With the Gtube

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

    B was transferred last night to the acute care hospital, which was unprepared for his arrival. No feeding formula. No seizure meds. Three hour wait for those to be found or delivered.

    B's mom was told that she could not spend the night, although the rep, who gave her the tour that morning said that she could. B is in a double room, so the other patient/family have to give permission, forms need to be signed, blah blah blah. And "it's too late now for us to do that."

    So, B's mom said, "Okay, I will carry B to the lobby, and we will stay out there until you have permission for me to spend the night." B's mom's sister-in-law was there, and she said to B's nurse, "She means it. She'll do it."

    The nurse left, spoke to the nursing manager, and returned to tell B's mom that she can stay "just for tonight."

    They are in for a surprise, because B's mom doesn't intend to leave B.

    The NG tube dislodged and slipped out of B's nostril, which resulted in displacement of the tube in his gut. The nurse removed that tube, put in another in the same nostril (I would have tried the other nostril), and he had an x-ray to verify placement. After the x-ray, the tube slid out again. That was it.

    B's mom said that that was the moment, when all the things I've been discussing with her about the Gtube clicked, and she decided on getting a Gtube for B.

    I applauded her decision and told her, "You won't regret it. You will soon realize that it was one of the best decisions you ever made for him."

    B's nurse told her that they have a GI doc, who will perform the procedure there at the acute care hospital. I suggested that she call our GI's office, as well as our family doc (B and Jon have the same doc), and ask for our GI to do the procedure at the GI lab at our hospital. Then, heaven forbid, if there are any complications, it can be handled there at the hospital. I don't know whether that will happen, but if we don't ask, we'll never know.

    Since B has intractable seizures, B's mom knows how to manage his seizures. Status is what she couldn't manage, of course. It sounds like B is returning to his baseline in his seizure activity, and we know he will never be seizure free, sadly.

    The remaining issue then is hydration and nutrition. Once the Gtube is in place, and she is trained in using it, I strongly feel that she can take him home. I would suspect that he will have home health care nursing, at least for a few weeks. I would love for B to have Jon's wonderful nurse, but I don't think that B and mom live in our nurse's territory, as they are south of us by 10 miles.

    Once B's nutritional status builds up, I'm hoping that he will be able to swallow. I'm also hoping that getting that nasty NG tube out of his nose and throat will improve his swallowing. But, as I told B's mom today, if it doesn't, you never have to worry about him not getting water, food, or meds.

    And, Tamie, thank you ~ I told B's mom what you said that Tyler's Mic Button is his mouth and the tube is his esophagus, and she really grabbed on to that! It's just a different way of eating. She is also consoled to know that she can feed him the real organic food, which she prepares so lovingly for him.

    And I know that she will find it so much easier, as oral feeding can take so long, when dealing with coughing, gagging, choking, swallowing. This will be a relief for her and for him, and save her so much time and energy. At her age, she needs to take that into consideration

    When we think about what is "normal," we forget that what is normal is eating orally and swallowing without issues. There was nothing "normal" about what Michael and Jon went through to eat orally, as their conditions worsened. It was not normal to cough and choke, to get pneumonia, and it wasn't normal to take 2 hours to eat a salad and lasagna.

    What is normal is that Jon (as with Michael) is properly hydrated, nourished, and receiving his medications. For many, probably most, people, a Gtube facilitates that normality and greatly enhances quality of life.

    Although B's mom has diligently cared for B, she might be amazed at how he flourishes with more nutrition. I was/am with my boys. I never want to hear the term, "malnourished" associated with Jon again. I heard that word with Michael too. It hurts.

    "What kind of mother am I if I let my child become malnourished?" I wept into Jim's arms, when I heard that term used to describe Michael.

    And Jim said, "You didn't want to take away the last bit of normalcy he had."

    It took time, but I recognized that he had less normalcy before his Gtube. And for Jon, the same was true. After all of his teeth were removed, the answer was obvious. One option only.

    If people only knew the turmoil we endure in making these decisions for our children, and accepting and adapting to their changes and needs, the world would be a much different place.

    And all of you Mamas here know exactly what I'm talking about.

    Thank you for your loving thoughts and prayers for B and his terrific mom. Let's keep positive thoughts flowing that B can have his Gtube placed by our wonderful GI at our hospital. That would be a very good thing for B and his mom. I guarantee it.

    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. #23
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    Default She's Taking Him Home AMA

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

    B's mom is extremely upset with the acute care facility. She hasn't signed the admission papers, because she asked for time to read them, and the admitting clerk insisted that they had to be signed immediately.

    Several things are catapulting B out of there by his mom.

    B's mom had a close look at B's bed frame, and it is filthy. She says it looks like dried blood and bodily fluids. Now, B's mom is a fastidious woman, and you could eat off of her floors. She has very high standards, and she isn't used to the hospital setting, where things are not immaculate.

    She asked for another, clean bed. She was told that all of the beds are the same.

    A pulmonologist is on the case and has prescribed two antibiotics, claiming that B has a lung infection. However, according to B's chest x-ray, his lungs are clear. Which is it? They were clear when he left the hospital on Friday to be transported to acute care.

    First of all, the pulmo should have told B's mom, "B has a lung infection. X-rays show some infiltration on the right lobe. I'm going to prescribe antibiotics. Has B ever taken (drug names)? B's CBC indicates infection too. It is (give number) and we'd like to see it at (give number)." But he didn't.

    She has asked numerous times for a print out of B's meds, and she never gets it.

    She asked for water to flush B's NG tube. The nurse brought in a large cup and filled it with the tap water at the sink in B's room. B's mom was outraged at this, but it doesn't surprise me. It's happened to me in the hospital. So she brought in bottled water, which is what I do for Jon when he's in hospital.

    B's seizures are lessening, and he's peeing well without a catheter, and she wants the NG tube out, and to take him home.

    The plan is to call B's doc in the morning to tell him she is busting B out of the acute care hospital. She wants to take B to see the doc (he's just down the street, basically), and she wants to give him the full overview of what's been happening to B.

    From there, she is hoping that our doc will get in touch with our GI, and arrange for B to have a GTube placed in our hospital (not the acute care hospital ~ B's mom said she would never allow that to be done there). She will also ask our doc to set up home health nursing, with our agency, so that they are in place when B comes home with his GTube, and she can have all of the supplies there waiting for the nurse to train her.

    In the meantime, she will endeavor to feed B Ensure pudding as often as he is able to manage it, and I'm praying that he doesn't aspirate. It's hard to swallow after the NG comes out, because the throat is sore, along with the roof of the mouth.

    She insisted to me that B isn't going to die if he goes without nutrition for a day or two, because he has some under his belt now. She wants the Gtube for him, but she wants the assurances of being in our hospital, with our well known and beloved GI at the helm.

    She also is afraid that the acute care people will make B more ill, and that the lack of care (1:8 nurse/patients) and attention to detail are jeopardizing B. When she asks, she doesn't get answers, or she gets unsatisfactory answers.

    She strongly and emphatically feels that she can't leave B in this acute care hospital, and I can understand her concerns. It sounds like it's gone downhill in the past few years, according to our neighbor's praises of the place after his several visits.

    Here's the thing: they aren't used to patient's family members being there 24 hr/7 days, nor to the informed questions B's mom is asking, or the rights she is enforcing by asking them. That's how they get away with inferior care.

    B's mom said, "If he's going to die, he isn't going to die here!"

    My prayer is that our doc will send her and B back to our hospital, with the stipulation that B goes to Step Down, awaiting a Gtube. Get our GI on board to do it within a day or two. Have at B's mom's disposal the hospital dietitian and speech pathologist, and nurses, who are loving and supportive, to help B's mom understand the tube, identify # of calories and amount of free water B needs, etc. Have the social worker coordinate home nursing and supplies, so they are there when B and mom come home.

    It can be done. I just pray it will be done. Because, clearly, times have changed.

    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.

  4. #24
    Distinguished Community Member andromeda31's Avatar
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    Hi-

    OMG, how scary!! I surely would do the same thing! Praying he can get in with the good GI dr at the regular hospital!! 1:8 nurse ratio seems really not good enough. I got shingles from all the stress after a hospital stay with Caitlin one time where they didn't have enough staff. They have since hired 'care partners' to assist the nurses so they have time to focus on the medical issues. (the care partners do the more 'grunt' work-change pukey sheets, take bp & temp, stuff like that). Is it 1:8 with lots of aides to help or just purely 1:8? I remember how mad my mom was when she had a surgery once (it was not an overnight stay one but she still got put up in a room after though until going home)...she went on and on about how she could have just died and no one would have known since nobody came around to check on her hardly. I said, well that is how it is now! (this was around the same time as my shingles incident) Before having me, she was a nurse's aid in a maternity ward and she said back then (so early 1970's) they had tons of aides doing stuff for patients. When I was in the hospital in 2003 on bedrest (preterm labor)...in a 5 day stay, I got one sponge bath and hair washed only once! I was not allowed out of bed so couldn't do that stuff for myself...but only 1 nurse did that for me! That is so gross about the dirty bed at the acute care place...I was just telling Brian about this post...and how even when C is in the hospital, I will pull out the nightstand next to the bed and see old medical stuff and dirt behind the back of it. I could go on all night, but getting off my soapbox! :) Hoping your friend will get lots of services to help her out at home with B so she can be in charge and B can be well cared for!!

    Lisa O.
    Last edited by andromeda31; 03-17-2013 at 06:04 PM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  5. #25
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    Ohhhh wow. She right, her son will die in there if she doesn't get him out. I hope and pray that your friend can get a great doc in the community who will tag team to get the most homecare support possible. I sure hope your friend and her dear son will be OK - sounds like she knows what she's doing, alright. Prayers tonight!
    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


  6. #26
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    ((((((Lisa & Donna))))))

    Wow! More horror stories, Lisa! One bath in 5 days is awful! A daily bath is important to keeping the germs at bay! It really is frightening! B's mom hasn't mentioned aides, but she said that the nurses check patients once an hour, so I would guess the 8 patients are on some kind of rotation. If you have a problem between your next turn to be checked, too bad.

    Donna, B and Jon have a wonderful family doc, who will do everything he can to help B and his mom. The operative word is "can," as it appears that all care is now insurance-motivated. So, if Medicare won't pay for this or that, you do not get this or that.

    B's mom and I have been working on strategy everyday, and she is a smart gal, well-heeled, with decades of experience. She knows how to use drama to make her point, and she does it with an innocent, naive approach, which fools them every time!

    Thank you both for your positive thoughts and prayers and for being in the fight with us.

    Stay tuned ...

    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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    Wow such awful stories of poor care. Kathleen has been hospitalized several times at very good hospitals but I would never ever leave her alone with no one to advocate for her. Things can go very wrong. At a rehab hospital after her trokes she was almost given an overdose of a muscle relaxer(can't remember the name). I insisted that the dose the nurse was giving her was way larger than her past dosage it took me insisting she go back and check the dosage. It's great that B's mom can advocate so strongly for him. I pray she gets it all worked out the way she has planned for him. thanks for the update.
    Mary Grace

  8. #28
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    Thumbs up B & Mom Are Home!

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

    Mom brought B home last night, but it wasn't Against Medical Advice after all.

    The acute care hospital (ACH) neuro visited B yesterday to discuss B's med doses and his orders for Ativan every hour as needed, a direct contradiction of the order given by the major hospital neuro (whom I know, as he has treated Jon a few times). When B's mom told him that she was taking B home, the ACH neuro pleaded with her to let him stay a couple more days.

    That's when she told the neuro that she had observed the aide bathe the other patient in B's room, using B's basin! Then the aide left the room with the same gloves and gown on and returned, filled up the basin with water, and came to wash B's face! Wearing the same gown and gloves!

    B's mom told the aide, "You are not coming near my son or touching him! I watched you. You used my son's basin to wash the other patient. You washed the other patient's private parts! You haven't changed your gown or your gloves. Get away from my son!"

    A niece of B's mom was visiting at the time of the neuro visit. She is a CNA at another hospital. She told the neuro that she had been there with B and his mom for 4 1/2 hours, and not once had a nurse so much as looked into the room for B or the other patient.

    This will astonish you: B's hospital bed at the ACH doesn't have side rails!!! If his mom isn't there constantly, he could seize, or just roll over, and easily fall on the floor. He could be there for hours and die! How is this possible? That's a basic safety feature in a hospital bed!

    B's mom told the neuro that she has help at home, with her niece, her sister-in-law (who is a retired nurse), and another cousin. She told the neuro that B was eating orally, and that she wasn't going to let him stay in the ACH for one more night.

    The neuro looked like a deer in the headlights and said, "okay." I'll bet he's thinking: LAWSUIT. Justified in every regard given the extensive list of unsafe conditions in this place.

    He wrote prescriptions for Vimpat and Keppra, and she took her boy home. Note: The ACH neuro offered to take B as a private patient. B's mom thanked him and said, "sure," knowing full well that she's taking him to our hospital neuro as a private patient. She is coy.

    This morning, B's mom reported to me that B slept all night, with no seizures, that he is eating well and drinking thickened water with no choking or coughing. She gave him a wonderful bath, and put on a nice, crisp new shirt and pants. And B is a new man!

    Today is B's 38th birthday! What a great birthday gift! I wished B a happy birthday, told him we loved him, and that we are glad he's home, and his response was joyful. I know his sounds and recognize the differences in them, and I was so tearful to hear his elation. B's mom said B was just so happy. We sent him a balloon bouquet and flowers for his mama as a surprise.

    She intends to follow up with B's (and Jon's) PCP, our GI, and the hospital neuro. She hasn't given up on the Gtube, but she wants to give B a chance to eat orally and measure his success in terms of calorie and protein consumption. She wants to give him a week, and that's fair, since he is doing well now. But at the first sign of a problem, she will pursue the Gtube. No more nasal tubes for B!

    B's mom hadn't slept or showered for 2 1/2 days. She is so exhausted. She drank several cups of strong coffee after they got home last night to stay awake all night watching B. She sat in the den, instead of laying on her bed. Bless her heart, she fell asleep! Hopefully, with the help of her family, she will now be able to get even more sleep. Remember, friends, she is 70 years old!

    She asked me to thank all of you from the bottom of her heart for your prayers and support. She is truly grateful, and she knows that you understand all that she and B have gone through these past 11 days. Our prayers worked. They are home. Safe. Happy. Well.

    Thank you all!

    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.

  9. #29
    Distinguished Community Member andromeda31's Avatar
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    WOW! Glad to hear B is home safe and sound, and Happy birthday to B! :) That is horrible about the bath, how gross!! I definitely would never leave anyone alone in a hospital now after all that I've experienced and hearing other people's stories!! That is unreal that the bed didn't have rails....shocked that they even make hospital beds without rails! Whenever C is in the hospital, rails are up and they bring in the jumbo seizure pads to pad them. I think those are a bit overkill for C, but I am always told it is the rule for seizure patients. They tend to block C's view of the tv so I have to jiggle them around to she can see around them. So glad the ACH neuro didn't put up a fuss about B going home. I am the same way on switching doctors....I just slink off into the sunset...not wanting to make waves. LOL! Did the same in february when we saw our neuro clinic for the last time...yup, see ya in 4 months (not!). Hope B remains stable and the eating works out for him. Hope your friend can have some help from family so she can catch up on rest, it's hard to be 'on' for so long.

    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!!

  10. #30
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    Ohhh what wonderful news. Prayers answered for B but I'm concerned about your friend's health and her lack of sleep. I sure hope she is able to recover from this awful nightmare. I can just imagine how much she values your friendship and support, Rose. Not many will understand her situation as you do! xoDonna
    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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