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Thread: What Is Next For Jonathan?

  1. #51
    Distinguished Community Member agate's Avatar
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    Rose, I'm so glad that the Baclofen worked on the hiccups and that you had a real Thanksgiving, the 4 of you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #52
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    It only took a few doses of Baclofen to calm Jon's hiccups, and they have not returned!! YAY!!

    Today, his nurse visited to change Jon's catheter. All went very well. We are hoping that we have the remedy now to keep it in place to prevent excess leakage.

    His vitals are excellent. And he couldn't stop smiling at her. She has taken such good care of him (and us), and he loves her dearly. And vice versa, of course.

    Since her next visit isn't until after Christmas, we gave her gifts today. She has an old avocado tree in her yard, which produces the most divine avocados. She brought us 1/2 dozen. What a treat! You can't buy avocados in the store that are anywhere near as delicious as hers.

    We're on a roll ... let the positive vibes continue!!

    Thank you all for your love, prayers, and support. As always, please know that we love and pray for you all too.

    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. #53
    Distinguished Community Member agate's Avatar
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    I hope your letter will get some results, Rose--good results for you. Seems as if they could at least have given you advance notice of this change and included possible options for you. Changing the rules without notifying the people affected by the change is so unjust.

    It forces you to live in everlasting quicksand, never knowing what is going to change next or how much inconvenience that change will cause you.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #54
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    agate ~

    I think you're referring to the supplies situation, which is now resolved. I learned that Jon's nursing agency is not a DME, so they weren't supposed to be supplying patients. The kibosh was put on them by a new director. So I didn't write a letter.

    With the new supplier, it seems I have to negotiate every month to get what Jon needs and was prescribed by his physician, and not what they want to send to Jon. He has a DeVilbiss suction machine, and only DeVilbiss canisters will fit it. I had to discuss this with a supply rep for nearly an hour last week. Jon's canisters and tubing arrived today, and they are the correct ones. So, I succeeded! I hope I don't have to reinvent the wheel every month!

    Jon's catheter is holding, with minimal leakage. He's lethargic, likely a combination of his seizure meds, hypothyroid, lymphedema, and lack of exercise.

    We'd love to get him out of bed, if he could tolerate it. We're trying more therapy and massage with him these days, so we're working toward that goal.

    On Monday, the young lady, who helped me to the van to load my groceries, commented on what a great van it is. It's a 1998 Dodge Ram with a raised roof and custom interior detailing. W/C lift in the back, two w/c tie downs for Jon and Michael. Four Captain's chairs. We used to take the boys out of their w/c's and put them in the Captain's chairs, which were specifically designed for them.

    I said to her, "We bought this for our sons, both of whom used wheelchairs. It has a TV too, so that they were always entertained. But my youngest son passed away, and my oldest son hasn't been able to go out in the van for over a decade. We're thinking we should donate it, and get a smaller, more efficient car."

    When I turned to get the next bag from her to put in the van (which is not convenient at all, as I put them in front of and behind the captain's chair (Jon's) on the side of the van), she had tears in her eyes. "I'm so sorry."

    I thanked her, and apologized if I over-shared. "You didn't. I hope I see you again before the holidays."

    When I got in the van and put the key in the ignition, I turned around to look at the back of the van. I saw my boys, in their Captain's chairs, watching the TV, laughing, with Jon pointing at every fast food sign, and announcing, "Hamburger!" All of the memories of our outings, both good and bad, flooded through my brain in an instant.

    "Okay," I sighed. "I need to get gas and get home."

    No time for nostalgia. We live in the Now.

    Thank you all for your continued 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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  9. #55
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    Rose, Such a beautiful story. Your beautiful family touches so many people. You seem to always share just the right amount to just the right people. I absolutely believe everyone enters our life for a reason. YOu don't have to answer this but do you keep a journal?
    Mary Grace

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  11. #56
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Jon had insomnia, and we gave him 1 mg of Ativan, which allowed him to sleep, but also made him groggy. He filled with fluid, his SATS dropped, and we put him on oxygen at 2.5 liters. Lots of suctioning and breathing treatments yesterday and today. We weaned him down on O2, and he is off now, holding low 90s SATs. No fever. Alert and communicating well.

    The last time we had an episode like this was in January, the day after Jim and I met with Dr. P and learned the extent of Jim's cancer, which was also Jim's birthday.

    And, of course, it's Christmas, so that's the ideal time to have a problem. At least it is in our family. I've spent many Christmases in ICU with one of my sons through the years. With Jon in recent years, two Christmases: 2004 and 2010. We don't want to go there again. How can I split my time between Jon at the hospital and Jim at home? Jim can't go in with Jon for the night shift, because he can't be exposed to germs. It's just the worst possible scenario for all of us, so we just can't have this escalate into a hospital situation.

    Plus ~ I've worked so hard to create Christmas in our home ~ we have to be HERE!

    Michael's 7' wire ornament tree is still unassembled. The ornaments box and lights box are still in the living room, actually obstructing the front doors, should we have an emergency and need paramedics. Not good.

    I wrapped presents for the 12 members of John's family, while sitting in Jon's room today. Tomorrow, our beloved florist will deliver arrangements for them, which I'll give to John when he comes over tomorrow to turn Jon. John will be Santa. I used to be so creative with my gifts to them, but this year, I just don't have the energy to bake, or craft, or order and wrap gifts. The gifts they're getting are just stocking stuffers. I know that they all understand and probably expect nothing from us this year, since they are all intimately involved in our journey. We just needed to say thank you to them.

    I will update Jim's thread with his news from today.

    Living on the edge of our seats these days ...

    So we focus on the NOW and move forward with determination and grit ...

    Christmas at home. That's our goal.

    Thank you for your continuing prayers and love and support.

    Mary Grace ~ Yes, I do keep a journal. Right here. And you've been reading it for many years.

    I've been told many times that I should write a book. I have. For 17 years, I've been writing a book on CN and BT. I've been telling our story here, sharing our experiences and lessons, grieving for Michael, fearing for Jon and Jim, and every one of you has accompanied me.

    BrainTalk is my book, my journal, my life story, my sons' life story, Jim's story, and everything that I could or would ever write in a different format. And if my 17 year old book/journal could be printed and bound, it would need 100s of volumes and take an eternity to read.

    My "soul" purpose is to help others, by sharing the lessons I've learned on my journey. And along the way, I have learned so much from everyone on BT. It's been an incredible and enlightening adventure to be here.

    I truly and deeply thank you all, who are still here, and who were here in the past, for embracing me into the BT family. I am wiser, because of you. I am less fearful, because of you. I am inspired by you. I admire each of you. And I am forever grateful to you for all that you've given to me to strengthen me through the challenges we've faced in our family.

    I hope that you all know that I love you, and you are really in my prayers.

    Abundant blessings upon you and your loved ones ~

    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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  13. #57
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Wounds

    ((((((Hugs to All)))))) ~

    Well, the incredibly wonderful news is that Jon's SATS are in the upper 90s, and he's off oxygen. Like it never happened. Jim and I are ecstatic.

    But now, we move on to another major concern: wounds.

    He scratched himself raw on his right lower back and on his left outer hip. We aren't sure whether this is from the restraints, which we have to use at night, because he flails and slaps his tummy and chest. This is a permanent side effect from Reglan given to him in the hospital in 2004, when he had his colostomy surgery.

    On the bottom of his scrotum, he had two fairly small Stage 1-2 decubitus ulcers, probably from irritation related to his constant foley catheter leakage, and the underpad and pillow case I place beneath him to capture the overflow without wetting his sheet/bed.

    These are all new/recent wounds, and they are draining fiercely.

    These wounds are in addition to long-existing wounds on his coccyx and his upper left thigh. They are intact, unchanged and not draining, thankfully.

    John came over this evening, bearing gifts for us. He definitely overdid it! He shouldn't be giving us anything, because he has done everything for us this year. I don't know how we would have survived without him.

    When we turned Jon, we realized the extent of the drainage, and we discovered the worsening of the scrotum wound, plus the new wound on his right side. I cleaned all of the wounds, applied triple antibiotic ointment, and covered them with Optifoam pads.

    Here's the problem: These wounds need to be cleaned and new pads placed every day, and we simply cannot do that. Jim could turn Jon, but he's not supposed to turn him. And Jim is struggling with lower back pain. John has a large family and lots of holiday guests and plans. We can't intrude on his life every day.

    Our concern was evident, and John said as he left, "Keep me posted about the wounds, and let me know if you need me." Tomorrow, John is playing golf at 12:30. Saturday, he works with his cousin in a family business in South Bay. He has guests for an open house on Saturday evening. Sunday, he is gathering with his family for Christmas, and Monday morning, the family is gathering at his home for breakfast.

    Tomorrow, his wife has to go to San Diego overnight for her work, and she has to work on Christmas Eve. She's in upper level management for a large floral corporation, and Christmas is a busy time in the floral industry.

    So, how can I impose on him everyday to visit to turn Jon?

    John said that he would visit on Christmas Eve with his daughter, so I'm sure that he'd be willing to turn Jon for wound care then. His daughter will sit in the living room with her cell phone, content.

    So, we managed to get through one potential crisis only to have another one to conquer.

    This is one for Jon's nurse. I hate to trouble her at Christmas, because she works so incredibly hard and never gets a respite. But I need her now. We'll need to get the doctor to request a wound care nurse, then wait for an authorization from Jon's Medi-cal provider. I need to call the new medical supplier and request more Optifoam and suctioning accessories. And ... and ... I need to make a list.

    This is Christmas in Our Home.

    A wound on Jon's jingle bells.

    There. I made it sound more festive.

    Thank you for your healing thoughts and positive energy, your love and prayers.

    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. #58
    Distinguished Community Member houghchrst's Avatar
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    ((((((((Rose))))))))) Praying for a solution to your dilemma. Spread the hugs around.

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  17. #59
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    Quote Originally Posted by Earth Mother 2 Angels View Post
    This quote is hidden because you are ignoring this member. Show Quote
    ((((((Hugs to All)))))) ~

    Well, the incredibly wonderful news is that Jon's SATS are in the upper 90s, and he's off oxygen. Like it never happened. Jim and I are ecstatic.

    But now, we move on to another major concern: wounds.

    He scratched himself raw on his right lower back and on his left outer hip. We aren't sure whether this is from the restraints, which we have to use at night, because he flails and slaps his tummy and chest. This is a permanent side effect from Reglan given to him in the hospital in 2004, when he had his colostomy surgery.

    On the bottom of his scrotum, he had two fairly small Stage 1-2 decubitus ulcers, probably from irritation related to his constant foley catheter leakage, and the underpad and pillow case I place beneath him to capture the overflow without wetting his sheet/bed.

    These are all new/recent wounds, and they are draining fiercely.

    These wounds are in addition to long-existing wounds on his coccyx and his upper left thigh. They are intact, unchanged and not draining, thankfully.

    John came over this evening, bearing gifts for us. He definitely overdid it! He shouldn't be giving us anything, because he has done everything for us this year. I don't know how we would have survived without him.

    When we turned Jon, we realized the extent of the drainage, and we discovered the worsening of the scrotum wound, plus the new wound on his right side. I cleaned all of the wounds, applied triple antibiotic ointment, and covered them with Optifoam pads.

    Here's the problem: These wounds need to be cleaned and new pads placed every day, and we simply cannot do that. Jim could turn Jon, but he's not supposed to turn him. And Jim is struggling with lower back pain. John has a large family and lots of holiday guests and plans. We can't intrude on his life every day.

    Our concern was evident, and John said as he left, "Keep me posted about the wounds, and let me know if you need me." Tomorrow, John is playing golf at 12:30. Saturday, he works with his cousin in a family business in South Bay. He has guests for an open house on Saturday evening. Sunday, he is gathering with his family for Christmas, and Monday morning, the family is gathering at his home for breakfast.

    Tomorrow, his wife has to go to San Diego overnight for her work, and she has to work on Christmas Eve. She's in upper level management for a large floral corporation, and Christmas is a busy time in the floral industry.

    So, how can I impose on him everyday to visit to turn Jon?

    John said that he would visit on Christmas Eve with his daughter, so I'm sure that he'd be willing to turn Jon for wound care then. His daughter will sit in the living room with her cell phone, content.

    So, we managed to get through one potential crisis only to have another one to conquer.

    This is one for Jon's nurse. I hate to trouble her at Christmas, because she works so incredibly hard and never gets a respite. But I need her now. We'll need to get the doctor to request a wound care nurse, then wait for an authorization from Jon's Medi-cal provider. I need to call the new medical supplier and request more Optifoam and suctioning accessories. And ... and ... I need to make a list.

    This is Christmas in Our Home.

    A wound on Jon's jingle bells.

    There. I made it sound more festive.

    Thank you for your healing thoughts and positive energy, your love and prayers.

    Love & Light,



    Rose
    I hope you are able to have some kind of Christmas holiday. I laughed more at that jingle bell joke that I should have. Sorry. All the best and prayers coming!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  18. #60
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up A Happy Holiday

    ((((((Hugs to All)))))) ~

    funnylegs4 ~ I'm glad you laughed at the jingle bells joke. We need levity to balance the anxiety! Thank you for your prayers.

    Chris ~ Thanks for your hugs ~ they are being spread around frequently!

    John just left, and he didn't bring his daughter. He was more than willing to turn Jon so that we could check his wounds. And ... they look great! No drainage, and the Stage 1-2 ulcers are mending nicely. We couldn't ask for a better Christmas gift than this!

    Jon was thrilled to see John, where he had been sleepy and lethargic prior to John's arrival. John said to Jon, "I'm anxious for you to open your Christmas gifts from us! Something for everyone!"

    Our metal trees are up and decorated with lights and ornaments! They look very pretty. The house is clean, and the most important laundry is done. Now, I rest! YAY!

    We are looking forward to a peaceful, joyful day today and tomorrow. Just relaxing.

    We wish the same for all of you, and we give thanks for the blessing you are in our lives.

    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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