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Thread: What Is Next For Jonathan?

  1. #151
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna)))))) ~

    Jon is happy and healthy today. John just left after The Turning, as we now call it. It's such an ordeal for Jon. So many wounds to treat. And we have to be careful that he isn't laying on his catheter or his colostomy bag, when he's on his side. Today, the colostomy clip dug into his thigh!

    His nurse will be here Thursday to change his catheter. John said that he would be here to turn Jon, so that she can inspect his wounds. Jim said that he could do it, and we'd just change his under pad. He needs his entire bed changed, otherwise, he'll go a week with the sheet we put on today. God Bless John!

    John's mom is in the hospital. Her shunt was removed, as the doctors wanted to rule out it as a source of infection. From John's descriptions, it seems to me that Rose has some neurological deficits. I am very worried about her.

    Today, John's daughter turned Sweet 16. She is a volleyball star on the varsity team. I get to play "Grandma!" So, I had fun finding her cute gifts ~ a sterling silver necklace with a heart inscribed with her initial, and a volleyball charm; a sterling silver key chain with "Live Love Volleyball" inscribed on it; an angel visor clip for her car, with a heart, her name inscribed, and on the back it reads: Never drive faster than your guardian angel can fly. And a gift from Jonathan ~ "Jumanji: Welcome to the Jungle" Blu-Ray. Jon loves this movie.

    She is quite excited to start driving, as are John and his wife. So, I combined driving and volleyball. I even enjoyed wrapping her gifts. I found really cool, sweet cards, and a darling gift tote.

    John showed us a video from today, when his daughter arrived at school, her best friend detained her with chatting, so she couldn't see the boy with a bouquet of roses and a banner reading: "I know it's your birthday, but would you give me a present and go to the Homecoming dance with me?" The banner was held by several of the boy's friends. Of course, she was surprised and delighted. And the boy is very handsome and tall. She is a natural beauty and tall. They look great together!

    And ... I went to the same high school, back in the covered wagon days. In those days, a boy would shuffle up to you and say, "Ya wanna go to the dance?" Although that did not happen to me. I never went to a Homecoming or a Prom. I dated a college freshman, who worked 3 jobs, and took care of his family, since his dad was disabled. He was a surfer and drove a Woodie. Then, he went to Vietnam. When he returned, he was damaged with PTSD and guilt.

    So, I love to see these boys going to great lengths to woo their dates. It shows respect and a nod to romance. And these two teens weren't the least bit awkward. They are good friends, and he's an athlete on the soccer team. I loved watching the video, because it gives me faith for the future generation. There is kindness among them.

    John's daughter wants to visit us and to visit Jon. She is just so busy. And she learned that kindness from her parents, aunts/uncles/cousins. They are just a lovely family with hearts of gold.

    Well, Jim called me away from my composition, because Jon's formula was leaking all over the floor. So, I spent about 15 minutes bent over scrubbing the floor.

    When I returned, I somehow erased the entire story of our bee problem. They build their combs in the floor beneath Jim's workshop, where he made Native American flutes. We dealt with it in 2016, and last year, when Jim came home from the hospital, and now they're back. But the lovely bee exterminator we had last year came out today and offered to remove the hive and replace the floor, after moving all of Jim's equipment from the corner, then installing a flash and screen to keep them out.

    He said, "Where I come from, we respect our elderly and help them. I am going to help you." Jim explained that he has cancer, and he said, "I'm so sorry. Don't worry, I will take care of everything."

    So tomorrow is MRI/CT scan day. And Wednesday, the bee guy will return. Thursday is Jon's catheter change and wound care exam. Busy week.

    I send you all of our love, Donna, and prayers for healing and safe travels. I'm so sorry about the tornado, and I pray that power has been restored to all.

    And love and hugs to 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.

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  3. #152
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    ((((((Hugs to All)))))) ~

    Bee Guy arrived promptly on Wednesday and cleared Jim's workshop, got rid of the comb, and sealed the side to prevent re-entry. That is far more than he is supposed to do, but he recognized that we were in dire need, and he helped us. We paid him more than he charged us in gratitude. We discussed our termite problem, because he's a general exterminator. When we're ready, he's ready to help us.

    We turned Jon yesterday without his nurse, as she cancelled and rescheduled for today. Jon's wounds looked slightly better.

    John brought us up to date on his mom. Shunt was removed, but she is still nearly catatonic. He had to feed her lunch on Wednesday. She can't hold a spoon or fork. Something terribly wrong here, and I'm not confident that she's getting proper care. She's not at our hospital, but a smaller one closer to her retirement community. She's in a new rehab place now. If this continues, I will suggest to John that he transfer his mom to our hospital.

    MED WOES

    This afternoon, our pharmacy called leaving a message that Jon's doctor had denied a refill on his Dilantin. I called the pharamacy (they're used to me calling them now), and the pharmacist said she spoke to the pharmacy "unit" at the doctors' offices. They said, he hasn't been seen in over a year, and he has to be seen to get refills.

    Deja vu all over again! These are the gatekeepers, who know nothing about the patient, and if their info says a patient hasn't been seen for a year, they automatically deny the renewal. Without consulting the physician!

    I called our doctor's office, and the woman, who answered asked me if I had HIPPA clearance for Jon. I was terse but controlled. I told her the problem and insisted that I speak to the doctor's assistant. She put me on hold for 10 minutes. She returned and said, "I'm sorry, but Jon hasn't seen the doctor since 2008, and we can't refill his prescription, until he sees the doctor."

    I replied, with steam coming out of all of my orifices, "I'm not going to have this conversation with you. I will not be quizzed about this. My son needs his seizure meds, because if he doesn't get them, he will seize and possibly die. At the very least, he will be intubated in ICU for weeks. Dr. A has been Jon's doctor for nearly 20 years, and we have an arrangement with him. That's all you need to know. I want to speak to his assistant now."

    Another 12 minutes on hold, and she returned to say she couldn't get reach the assistant, but she said she'd take a message. I answered angrily, "This is the message: Urgent! Jon needs his Dilantin refilled! Today!"

    The assistant called me within a few minutes, and she told me that the doctor will speak to the supervisor of the pharmacy unit and have Jon's chart red flagged to refill all of his prescriptions. I told her about our week, and I emphasized that I cannot tolerate any more stress about Jon's meds. This puts me into a state of fear every time. What if we run out, before I can get more? What if we have an earthquake, and I can't get to the pharmacy for a week or more? She understands and promises me that this will be resolved.

    Of course, this happened on a Friday afternoon. As per usual ... it's either the weekend or a holiday, when problems arise for us.

    CATH CHANGE

    Meanwhile, Jon's cath change didn't go too well. After the initial insertion, it slid out, and it needed reinsertion. Unstrap, deflate balloon, reinsert. Blood. Blood in urine. Blood seeping out of his penis. The urine blood subsided, but the blood oozing from his penis is still going.

    To prevent Jon from touching his guy, we had to restrain his wrists. After an hour, Jim decided to loosen one of the restraints to give Jon more freedom. With that freedom, Jon pulled off his colostomy bag. He and his fresh sheet were covered in poo. I actually put a wound care pad over the poo on his sheet, because we can't turn Jon (Jim's not up to it), and John is busy all weekend. If I put an under pad or anything else there to cover it, Jon would pull it off and drop it on the floor. Major cleanup. More laundry.

    I'd love to relax this weekend, but I have to order groceries from Instacart, easier than shopping in person, of course, but still time consuming. And I need to pick up Jon's meds at the pharmacy, do some banking, and get gas in the van.

    And of course ... laundry.

    It's just one long, continuing, never-ending day for me. Today, Yesterday, Tomorrow ~ it's all the same.

    Time now to whip up something interesting and delicious for dinner ~ Got to Feed Super Survivor Jim!

    Thank you all for your love, prayers, support, positive healing energy ~ We return it to you and your loved ones ten-fold.

    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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  5. #153
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    ((((((Hugs to All)))))) ~

    For the past two nights, Jon has been unbelievably agitated as he’s trying to fall asleep. We have to restrain his wrists, because he slaps his thigh and causes abrasions. Currently, we’re dealing with Niagara Falls from a 2 week (or more) old scratch on his left thigh.

    It takes 2 1/2 hours for him to calm down and go to sleep. So, I’ve spent the last two nights, at his bedside, holding him, comforting him, trying to calm him.

    This seems to coincide with the new Dilantin manufacturer, which we started after the old one ran out. Today, we found another batch of a different manufacturer, which we shelved, when our pharmacy scrounged up the last of the now defunct old manufacturer’s Dilantin. We’re going to try that this evening to see if he responds differently.

    We’ve also agreed that we will release his right hand, although we fear him pulling on his catheter. We wonder if the restraints are causing him to struggle to be free. I’m pretty sure all of us would feel the same way. And we hate to restrain him, but if we don’t, he harms himself. All of this is a residual from two doses of Reglan in the hospital in 2005.

    It’s all an experiment, and we’re flying by the seat of our pants.

    Jim had an Opdivo infusion today. He took a nap after he came home and missed the second half of the Dodgers/Brewers game. Dodgers won! Yay! He’s feeling well, no pain, and he only took 10 mg Prednisone before his infusion (he is weaning down from overdoing it and needing more a few days ago).

    I’m praying that we all get a good sleep tonight.

    Thank you all for your continuing prayers, love and support ~

    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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