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Thread: What Is Next For Jonathan?

  1. #151
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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, 49, (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, 49, (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, 49, (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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  7. #154
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    ((((((Hugs to All)))))) ~

    First night on the new Dilantin was less chaotic and intense. Jon was fairly mellow, but he still struggled to get to sleep. Lights were off at 11 p.m. He finally fell asleep at 3:45. He woke up at 6:45!

    For the last 3 days, he has slept 5 hrs, 4 1/2 hrs, and now 3 hrs. Sometimes he sleeps that much in one 24 hour period! Not these days.

    He wanted to nap all day, but I had to get him ready for John's visit, so we could turn him and dress his wounds. That includes a bath and a shave, so that woke him up a bit. John was early, as his daughter is playing in her first CIF (Regional Championship) game tonight (volleyball).

    I ordered 80 Optifoam pads (8 boxes of 10 pads) and a 5-pack of Butt Paste from Amazon today. The total = $580.

    Medi-Cal only pays for 10 pads/month, so I have to supplement. I use at least 3 pads/day for the gushing hip wound. Twice a week we use an extra 4 pads for wounds on his butt and coccyx. There were only 8 boxes left in stock, and I bought all of them!

    I wish Optifoam made a giant pad, like underpad size, and I could just wrap it around his entire bottom, from hip to hip.

    All three of us are just wiped out tired. I am a zombie. I keep looking at the clock counting the number of hours left before I might be able to go to bed. If things go well tonight, and Jon goes to sleep earlier, I have about 8 hours left on my shift. I hope I'm still somewhat coherent by then.

    Oh, and leaving Jon's right hand free probably did calm him, but he also scratched his colostomy flange, and now the stoma is excoriated. He also scratched his scrotum until it bled, a rather alarming amount.

    On the bright side, no seizures. Of course, Jim and I are on the edge of anticipation. Tense times for all of us.

    Next up, dinner. If I could hire one helper, it would be a chef.

    Thanks for listening, and for your love and support.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  9. #155
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    Gosh Rose I'm so sorry you have all this going on. I wish I could help I'm not a chef but I can cook LOL. I've been reading and praying for some relief I hope last night was better for everyone and included some serious sleep.
    Mary Grace

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  11. #156
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    ((((((Mary Grace)))))) ~

    It's always wonderful to see you here! I know how busy you are. If you ever get a free moment, we'd love an update on you and your family!

    Last night was MUCH better! Jon went to sleep at 12:40 a.m. after about an hour of "winding down." He was calmer, and I think he was so exhausted that he finally nodded off. He slept about 10 hours.

    I fell asleep fairly fast compared to my usual pattern at 2:15 a.m. I woke up at 7:30, usually it's 6:30. I guess I drifted back to sleep, because the next time I looked at the clock, it was 9:30!!! That was like being on vacation for me!

    Jim's sleep was typical, but he usually gets enough sleep, because he often naps during the day.

    We're getting ready to watch the Dodgers/Brewers game. If the Dodgers win, they'll have the pennant and will play the Red Sox in the World Series. I'm going to get all of the fixings together for tacos for dinner, so I don't have to do that during the game.

    Awww ... you're sweet to offer to cook for us! That reminds me! We've found some delicious gluten-free cookies, crackers, dough, icing, etc. The company is Simple Mills. Maybe some stores in your area carry their products. Otherwise, they have a website and you can order from them. SimpleMills.com

    Your family is in our prayers continuously. Hope that all is well.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  13. #157
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    Hi Dear Rose,
    I sent you an email today! love and hope that all in the Hacienda are having a GOOD night! xo Donna
    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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  15. #158
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    ((((((Donna)))))) ~

    I received your email and will respond, once I'm able to digest all of it. I spent most of today researching and reading, so I can fill out my mid-term absentee ballot.

    You are so wonderful to pull this all together for me. I needed a starting place. I don't know how we're going to keep Jon in our home after we're gone. But, we can't bear for Jon to have to leave his home, go to a strange place, with strange people. Nothing familiar to him any more. It hurts so much to think about this.

    Last night was another strange night. He fell asleep at midnight and at 2 a.m. he woke up. I was dragging and wanting to go to bed. Jim got up to relieve me. Jon didn't fall to sleep again until 6 a.m. He slept until 1 p.m.

    His SATS were 88-91, so we removed his trache plug. He coughed and SATS came up to 94+. His heart rate is still elevated at 103.

    It's the water in him. The fluid build up, and he's gushing out of his thigh like river rapids.

    I'm praying for delivery of 20 more Optifoam pads tomorrow. We've only been changing his thigh pad twice a day, because we have to keep our reserve for tomorrow to dress the wounds on his bottom and coccyx, when John is here for The Turning.

    Thank you again and again, Donna, for helping me.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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  17. #159
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    Hello dear Rose,
    One step at a time. And consider what options there may be with John's family. Consider how live in help might work combined with shift nursing (could you live at John's if his daughter is away at college?) All outside the box solutions are worth considering! I'm think you want a solution that enables you to be right there, but to supervise and and not to do the physical labor anymore. Jim will need to rest too, but you both need to be within walking distance of Jon's room at all times. How could that work? Seeing others care for Jon under your direction will slowly offer you the reassurance that you need to KNOW that someone you've trained has the skill and the love to the job well - not the same as you, but well. Once you have an idea of the arrangements that you think might work, then the lawyer can advise on what kind of legal papers need to be in place to support your choice over Jon's lifetime. Good luck my dear friend! xoxo Donna
    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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  19. #160
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    ((((((Hugs to All)))))) ~

    Donna ~

    That’s the rub: having an idea of the kind of arrangements we can make for Jon’s care.

    Today, I received a letter from Jon’s new Regional Center case manager. Turn over rate there is ridiculous. She wants to schedule a visit. I have to start from scratch. She has his file but probably no time to read it. I will want to cut to the chase and ask her what kind of supports are available for Jon, should Jim and I die, or we become incapacitated. I think that I will send her an email prior to her visit, so she can have the background information and be ready to help us with future planning.

    I would never want to live with John and his wife. They have enough going on in their lives to contend with me. My goal is to receive care in our home, should I need it. One of our neighbors, who moved here in 1977, when we did, is in her 90s now. She has had caregivers coming and going in shifts for years. I feel certain that she has dementia, which started at least 10 years ago.

    John has committed to us to be our executor and to ensure that Jon receives proper care in our home, after we die. But John will be 50 next month. So there’s that to consider too. I know the rest of the family would offer to help too, but they have no concept of what all that would entail. It’s an enormous responsibility to keep up with all of Jon’s needs, supplies, nursing, toenail, therapy, social worker visits, paperwork.

    It is overwhelming, Donna. This is why I haven’t made any progress. The other part is that it is quite depressing to imagine that we are gone, and Jon is left without us. The alternative, where Jon leaves before us, is also excruciatingly painful to contemplate.

    You have given me great ideas to get me started. When we get through this current “crisis,” I will put my mind on it, and buck up, and get to work.

    JON’S UPDATE

    Jon still has a 100 degree temp, with fluctuating SATS and an elevated heart rate. His urine output has been very slow, but it’s picking up now. His bowels had stopped moving, but they are in full swing again.

    Ironically, now that we have 30 Optifoam pads, his thigh wound has slowed down its weeping. And we were unable to turn him today, because he is full of fluid. Turning could result in gagging and vomiting.

    But Jon needed to be pulled up in bed, and I cannot do that on my own. Jim can’t do anything strenuous for at least 2 days after his tooth extraction today (see Jim’s thread for details).

    So, I texted John, and he stopped by to help me pull up Jon and change his under pads and thigh pad. He will be here tomorrow to turn Jon, if Jon is up to it. We have to treat the wounds on his backside.

    TIRED AND LONELY

    John said to me, “You look so tired.”

    No, “tired" is when you got up an hour early or went to bed an hour late. Or you had a longer-than-usual day at work. Even the word, “exhausted," doesn’t really describe how I am.

    When I finally get to go to bed, as I close the bedroom shutters, I look out upon our neighborhood. Nary a light on in any of the homes. Except for our home. Everyone is sleeping. Except for me. It’s dark, quiet, and everyone is sleeping. I feel lonely then and separate from the rest of the “normal” world. It’s so strange how it hits me then: we aren’t like other people; we’re very different. Very, very different.

    Of course, that has always been obvious to me. It’s just that at that moment, it becomes a profound reality.

    A long night awaits.

    Thank you, Donna, for your never-ending caregiving to me. We send our love to you, Jim, Nick, Natalie, and your beautiful family, who are always in our prayers.

    Love & Light,



    Rose
    Mom to Jon, 49, (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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