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Thread: What Is Next For Jonathan?

  1. #31
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Donna and Marcie ~ Thank you so much for your love, prayers, and support.

    Aside from doing a couple of loads of laundry Wednesday, I did relax and take it easy. That is, until I discovered that Jon's catheter was leaking and his bed was soaked! Every silver lining has a cloud.

    John and his daughter were at the World Series Game 7, and Jim and I cannot turn Jon and change his linens on our own. So, we did our best to clean up Jon and placed folded fresh under pads and pillow case under his bum and berries. At least that mitigated the issue of Jon laying in urine until yesterday evening, when John visited.

    Then, I opened a foley catheter kit, put on the sterile gloves, cleaned and lubricated Jon and the catheter, deflated the balloon and reinserted the catheter. I'm becoming fairly proficient at this ... unfortunately. It worked, thankfully. Until last night ...

    At 3 a.m. this morning, I noticed that Jon's output had slowed down considerably. He was sleeping, and I was falling over exhausted. I knew that Jim would get up to go to the bathroom and would check Jon. I left him a note in Jon's chart, which unfortunately, he did not see.

    When Jon woke up today, we discovered that his bed was saturated with urine. We irrigated his cath, and he peed over it. I measured the cath, and we realized that it had slid out quite a bit. So, I reinserted it again, and we got a great return.

    I texted John, knowing that he was taking his family out to dinner tonight for his wife's birthday. Bless his heart, as soon as he got home from work, he came over and we turned Jon, bathed him and changed his linens.

    I decided that the major leakage was caused by not taping down his tube, before we turned him last night, which allowed it to slide out. So we taped it well today, and thus far, he seems to be doing okay, with good output.

    Jon's nurse said that we're likely never going to be able to stop the leaking. A larger cath made it worse. We don't quite know the reason, but it could well be related to his enlarged prostate.

    Again, nothing we can do about that, as Jon isn't a candidate for any of the potential treatments. He's not even a candidate for testing, because he can't communicate with the physician about what he feels. We addressed this problem with two urologists in 2011, when Jon was hospitalized. Essentially, they said, "Indwelling catheter for the rest of his life. Good luck."

    I'm not complaining. I know that it could certainly be worse. We have plenty of under pads, sheets, and a sturdy washer and dryer. And we have John, our wonderful friend, who helps us. Yes, it could be much, much worse.

    As always, we give thanks for everyone here, who support us. Blessings upon 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. #32
    Distinguished Community Member agate's Avatar
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    Rose, I wish for your sake that your friend and helper John could be cloned! Is there any chance of rounding up another person or two to help--maybe as backup?

    My thoughts are with you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #33
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    ((((((Hugs to All)))))) ~

    agate ~ Oh, how I wish we had at least one back up for John. Our local friends are seniors; the rest live out of state. Our neighbors have never offered to help us in any way, so we sure wouldn't ask them to turn Jon, not that any of them are capable.

    I attempted to acquire an aide through Jon's home health agency. All of the aides are women, who want to adhere to a strict schedule, which suits their needs rather than ours. A couple of aides called to leave messages: "I'll be there tomorrow at 11 a.m. to 'bathe' Jon."

    Here's what's wrong with the aide setting the schedule, for example: A) We don't need a bath aide; we need someone strong to turn and hold Jon, B) Jon may not be awake at 11 a.m. tomorrow, and C) We just turned him today; we don't need you until two days from now.

    Nonetheless, we doubt, as does John, that these aides would be strong enough to turn Jon safely, because he weighs about 200 lbs with all of the fluid, has no hip bone on the left and rod and pins on the right, and he resists. His upper body strength is pretty powerful.

    And when we have an emergent situation, like Jon flooding his bed, we need someone, who can be here as soon as possible, and that isn't how it works with a home health agency.

    Alas, this is our dilemma.

    Thank you so much for your positive thoughts for us, Joan.

    Love & Light,



    Rose

    P.S. I forgot to mention that Jon peed over his cath again today, but thankfully, he didn't flood the bed as the towels, under pad and pillow case absorbed the urine. Once again, I had to reinsert his catheter. I need to get in touch with Jon's nurse to let her know that this is happening. Maybe she'll have a brilliant idea to stop it, although we've already exhausted all of her and our ideas. Big Sigh ...
    Last edited by Earth Mother 2 Angels; 11-04-2017 at 04:42 PM.
    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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  7. #34
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    Thumbs up

    ((((((Donna)))))) ~

    Speaking of forgetting ... I forgot to thank you for the link you provided about the IHSS program in California. Two thirds of our IHSS providers are related to the IHSS recipient, mostly parents caring for disabled adult children. The rest are typically offspring caring for elderly parents. This year, we were given a boon ~ we no longer have to pay taxes on our IHSS income, because we're related to the recipient.

    IHSS is tied to Medicaid, so if Medicaid is changed to block grants with caps on services, IHSS will be in jeopardy, along with 400,000+ recipients and their providers.

    Thank you again for sharing this information.

    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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  9. #35
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    Cool Happy birthday jonathan!

    Screen Shot 2016-01-08 at 7.35.14 PM.jpg

    HAPPY BIRTHDAY JONATHAN!

    Angels Danced On the Day You Were Born

    For 48 years, your smile has lifted my spirit,
    your hugs have warmed my heart,
    and your astonishing courage has strengthened my soul.
    Every day with you is a blessing,
    and I thank God that I was chosen to be your mother.

    Today, we celebrate wonderful you,
    and we surround you with love for the joy you bring to
    all who know you.

    God Bless You my beautiful, beloved boy ~

    Mama Loves You!

    Last edited by Earth Mother 2 Angels; 11-07-2017 at 04:14 PM.
    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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  11. #36

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    Happy Birthday to your beautiful Jonathan!

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  13. #37
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    ((((((Hugs to All)))))) ~

    Thank you, Marcie, for your birthday wishes.

    We celebrated for a week, giving Jon a new BluRay movie every day, finishing with Guardians of the Galaxy 2, since the first one is one of his favorites. Lots of great music in both movies, and Jim, Jon, and I danced quite a bit on his birthday! Jon loves for Jim and I to sing along (not because we're Frank Sinatra and Barbra Streisand ). We had lots of fun.

    And we sing "Happy Birthday" to him several times a day. We also gave him a musical card, which he really enjoys. Then, I pull out all of the musical cards we've given him in the past, and we chuckle and grin.

    When John arrived to turn Jon on Monday afternoon, he brought a 4 mylar birthday balloon bouquet, and a concert DVD of Dire Straits. Jon was over the moon, and that DVD has been played several times. Again, more singing for Mom and Dad. I tell Jon, "Thanks. We'll be here all week. Don't forget to tip your waiter."

    We thought that we conquered the leaking catheter, but alas, when we turned Jon yesterday afternoon, his cath slid out, and he began peeing over it. So, I reinserted it at 1 a.m. this morning and then again this afternoon. It's a never-ending battle, and it feels like we're losing.

    Perhaps it's the time change, or it's just another one of the things that happens to Jon occasionally ... insomnia.

    After running errands on Wednesday, then cooking and cleaning, I stayed up with Jon until 6:30 Thursday morning, as he struggled to go to sleep. Jim needed to sleep after his infusion on Tuesday, so I couldn't wake him to relieve me. He woke up about 6:15 a.m. and told me to go to bed. I slept for 1 1/2 hours. Dawn breaks, noise in the neighborhood begins. Jon fell asleep at 8:30 a.m. and woke up at 3:30 in the afternoon.

    Last night, same thing. But Jim went to bed early and relieved me at 3 a.m. Jon fell asleep at 7:30 a.m. and woke up at 4:00 this afternoon.

    Our main concern is seizures, as they are absolutely related to sleep/loss of sleep.

    So, we've increased his seizure meds dosages a little to cover the bases for now.

    Nonetheless, Jonathan is happy, cheerful and full of hugs and smiles.

    He's incredible!

    Thank you all for your prayers, love, and healing thoughts for Jonathan.

    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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  15. #38

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    Dear Rose,

    You amaze me! I don’t know how you do it! Happy to hear that Jon has had a great birthday week. We loved the Guardians of the Galaxy 2. The music was awesome.

    Marcie

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  17. #39
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    ((((((Marcie)))))) ~

    I don't know how I do it either!

    Jon continues to go to sleep late. On Friday morning, at 4:30 a.m., Jim and I agreed that Jon was agitated and needed an Ativan. We feared he was demonstrating seizure activity. Just as I was pouring the diluted Ativan into his G tube, he fell asleep! Before it even got in his system! So, he didn't actually need it, but he did sleep well.

    Last night, I re-inserted his catheter yet again, as he was leaking fiercely. It finally worked, and his output has been excellent, with far less leakage. We moved the location of the tape to hold the cath, and that seems to be the answer. For now anyway.

    Jim sent me to bed at 2:30 this morning, as we thought Jon might go to sleep earlier than he has been. No matter how exhausted I am, it takes me awhile to relax and go to sleep. I have to meditate to clear my brain and stop thinking, then I begin prayers. When I woke up at 6:30, I heard Jon still "winding down." He fell asleep at 8:30. But he only slept for 5 hours, so we're hoping tonight will break the cycle.

    I enjoy the humor in the Guardians of the Galaxy movies, but the music is the real draw for me. Jon enjoys it all.

    Now, I have to start finding movies to give him for Christmas. And then find a place to put them!

    Thank you for your continuing love, support and prayers, Marcie. Would love an update on you and your sons!

    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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  19. #40
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    Happy belated birthday to Jon!! Sounds like a fabulous week! Love the picture also. I think this is the first picture I've ever seen of Jon! Praying for a little more sleep for you all!
    Mary Grace

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