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Thread: The Really Good News

  1. #1
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up The Really Good News

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

    Finally, I have positive news to share!

    I requested a Physical Therapist consult a couple of months ago through Jon’s nurse. The PT supervisor said, “he’s bed bound. There’s nothing we can do for him.” That upset me, so I wrote a lengthy email to Jon’s nurse to share with the PT supervisor, in which I stated the reasons why Jon needs PT: to get out of bed! The PT supervisor caved into my request.

    Yesterday, Jon’s PT visited. A very nice, compassionate, gentle, and skilled PT, who specializes in fluid management, which is exactly what Jon needs. He diagnosed Jon with lymphedema, which is why his legs are like redwood logs, and his left side bulges, like he swallowed a basketball. Jon’s skin is taut and shiny.

    PT explained the physics of the condition, and then he demonstrated skin movement (like massaging) techniques to use on Jon’s torso, knee, calves, ankles and feet. He did it hand over hand with Jim and me, so we knew how to do it. We have to do this 2-3 times a day. When PT did the massage yesterday, Jon was fine with it. When I tried it later in the evening, and this morning, Jon pushed my arms and hands away. But I still managed to get it done!

    PT then gathered throw pillows from the love seat in Jon’s room, and bed pillows, and he showed us how to position Jon’s legs, to reduce the fluid, as well as to straighten Jon’s hips and knees. We have Posey foot pillows, which PT used to elevate Jon’s ankles and feet. Later, PT said that he’d try to round up pillows for us, and I laughed. Jon has at least a dozen pillows from the hospital. We take them home, because the EMTs use them to cushion Jon’s knees on the gurney. So we moved to those this morning. But the throw pillows are handy for extra leverage in straightening Jon’s knees.

    PT also put compression leggings on Jon’s calves to increase circulation and reduce fluid. They can be a challenge to put on, especially with our arthritic hands, but PT showed us some techniques to make it easier.

    At bedtime, pillows and leggings are gone. We give one last massage, and Jon sleeps in his usual position.

    Jon appeared comfortable and content once PT had finished the session. PT explained that this position, while to us may look uncomfortable, is much more comfortable to Jon than his other position and is already bringing him relief. Once the fluid starts moving, Jon will be a new man.

    SATS are excellent and heart rate is great, which indicates that Jon is relaxed and not in pain.

    We all really like PT, who has a great personality and sense of humor. I asked him if he’d move in with us, and he answered, “Where’s my room?” Jon responded so well to PT, and now Jon has another bud, who likes the Lakers, and admired Jon’s autographed Phil Jackson photo with envy. PT scored big points there!

    Jon’s PT is heaven-sent. I have no doubt.

    We thought we’d only get one visit, but PT said he would be happy to return as often as we need him. He really wants to work to get Jon well and out of bed and into his wheelchair. He told us to phone, text, or email him anytime, because his “mission is to serve Jon and you in his care, so that Jon can have the quality of life he deserves.”

    As I thanked PT, he saw the tears welling up in my eyes, and hugged me gently. “We’ll get him right, Mom.”

    PT will return next Tuesday to check on how we’re doing, answer questions, work his magic with Jon, and look at Jon’s wheelchair. The Roho seat needs to be inflated, and we can’t remember what it is supposed to look like ~ it’s been years, maybe 2008, since Jon has been in his chair. Just saying that hurts my heart for Jon.

    Tuesday will be a red letter day for Jon ~ his two adorable, sweet, pretty Podiatry Gals, will visit in the morning, maybe even meet PT on their way out the door! A day of attention from three loving care givers, who treasure Jon and support our family.

    This afternoon, Jon pulled out all of the pillows under his legs and threw them on the floor! So, I had to give Jon “the talk” again ~ why we’re doing this and how it will help him. “You want to sit with us on the patio and look at Mikie’s waterfall. Take walks around the neighborhood. Go For A Ride in the VAN. The only way you get to do those things is letting us do this for you now. No massage. No van. No pillows. No van. Okay?” He smiled and reached up his arms to hug me.

    For the first time in many years, we have hope that Jon will be able to get out of bed and be more active. We have an answer to his fluid retention. We have a plan to reduce that retention, as well as decrease his leg contractures. That plan doesn’t include any drugs of any kind to achieve the desired results. That plan doesn’t involve any braces or uncomfortable prosthetics. We have an incredible PT, who immediately bonded with Jon and us. We can do this. We will do this.

    Life here isn’t over yet. We’re going to make the most of what we have left.

    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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    Your post brought a huge smile to my face. The statement "We'll get him right, mom" brought tears to my eyes. I know so well what an amazing feeling it is to have someone who is by your side and who has brought so much hope to your family. I believe he will help you "get him right". It's nice to have someone else step in for a short time. That's how I feel about getting the PT for Kathleen. She hates when I massage and stretch her ankle but she'll smile at the therapist and say she's fine. I can't wait to read more positive updates and hear that Jon is up and out of bed! Keep us posted.
    Mary Grace

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    Good for Jon! So nice to hear there are still loving and compassionate people out there who see our children as viable human beings and not just a complex diagnosis. Hope to see a picture of Jon sitting in his chair or out and about with mom and dad.
    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."

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    Distinguished Community Member andromeda31's Avatar
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    ((((Rose))))

    That is so AWESOME!! Riding in the van was the first thing I thought when you said the goal of getting Jon back in his wheelchair! I am so happy for you all to have found such a great PT!!

    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!!

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    Question Fluid Detoxing and Seizure?

    ((((((Mary Grace, Tamie, & Lisa)))))) ~

    Thank you so much for your support! I knew you would all understand what a milestone this is for Jon and for us, in our struggle to provide him with the best possible care. And you know also that having a great PT is an enormous blessing, and we struck gold with Jon's PT. I'm sure that Jon's PT cares for lots of cancer patients, as well as people with diabetes, and cardio or neuro issues. He has seen it all, and it is very obvious that he chose his profession to relieve suffering.

    And PT was always positive. Never, "poor Jon," but "good Jon!" Lots of praise interwoven with chats about the Lakers and Jon's movies.

    Jim and I are doing our best to emulate all of PT's instructions and demonstrations, but it's not easy to do that. Jon is still resisting my massages, and Jim and I seem to reinvent the wheel every time we rearrange Jon's pillows and Poseys. This is why I asked PT to move in with us!

    But this evening, I gently removed the pillows and Poseys, then I used coconut/macadamia nut oil and began massaging Jon's legs. He seemed to appreciate the oil. His skin is flaky. We have to be careful about fissures, so his skin has to be kept moist. But those leggings tend to dry out the skin, and with oil on the skin, they are impossible to put on.


    I've been researching lymphedema, which is scaring me a little, because it is a serious condition. It's like Jon's system is detoxing from fluid.

    This morning when I awakened, the first word entering my mind was "seizure." I got up, found Jim and asked about Jon's night, as I always do. We give "report," as if we're in a hospital setting. Jim said, "At 1 a.m., Jon had a seizure for 15 minutes."

    The room was dark, with the exception of the flashlight Jim carried in with him. It was time to turn on Jon's G tube formula. Jon's arms stiffened, then his fingers curled into a claw, not a fist. Jon's head turned to the left, but Jim stayed on Jon's right side, so he didn't see Jon's face or eyes. Jon's arms relaxed, but his hands remained clawed.

    You would think I'd know by now how to label that seizure, but I don't. I just know that it has been at least a year, perhaps longer,since Jon seized. That is why I equate removing the fluid from his lymph glands to detoxing.

    I increased Jon's evening seizure meds a tad tonight, hoping it will cover any loss from his excessive urine output. A blood draw might be a good idea, but it's the weekend AND a holiday. Of course. So we fly by the seat of our pants. And the bottle of Ativan is on top of Jon's cabinet.

    I don't know what the risks are. Could Jon have a DVT? Could he have cardio problems? So far his SATS and heart rate have been superb. So, we just cling to that and to the expertise of PT. And we pray. A lot.

    Of course, I'll keep you updated.

    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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    I'm sorry to hear of this setback. I pray that it will resolve. I know what it like to emulate what the PT is doing. Kathleen hates when I massage and stretch her heel cord but when the PT is doing it she smiles. She'll ask Kathleen are you OK with this and she smiles. I have to explain that she will not tell you if if she's not comfortable. I'm working on her advocating for herself with others. Please keep us posted I pray that the weekend is uneventful.
    Mary Grace

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    Hi Rose, Do you remember Micky Ashley from the old days here? She has two children with disabilities, Jake and Katie. Micky has Lymphodema herself. I'm going to write to her and ask her to drop by and read your posts. Hopefully she can remember her password and get right in! How did yesterday and today go with the massage? I hope and pray no more seizures!!! Today is Nick's 26th birthday and we had a lovely time with gifts and cake :) xoxo
    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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    Thumbs up Progress!

    ((((((Mary Grace)))))) ~

    I think maybe Kathleen has what Jon has ~ a case of ABM ~ Anyone But Mom! Most of my care giving Jon doesn't mind, and he's cooperative. But if it's something new or intensely medical, he goes ABM on me.

    Jim was helping me yesterday with the skin movement, and I could tell his pressure was more massage than moving skin. I suggested a lighter touch, and he tried, then looked at me and shook his head. Then, he got a case of YDIBTM ~ You Do It Better Than Me. So, I'm elected. Jon is getting used to it now, so he isn't moving my arm away more than once a session.

    I hope that Kathleen realizes that if she's in pain, she doesn't have to hide it from anyone.

    Thank you for your prayers.

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

    I certainly do remember Micky and Jake and Katie. I'm sorry that Micky has lymphedema, and yes, I would be grateful for any first hand experience and wisdom she could provide. Thank you so much for thinking of Micky and luring her here to help us. Hi Micky!

    HAPPY BIRTHDAY NICK!!!


    Was Nick's Wish List fulfilled?

    Thank you for your prayers.

    ****** UPDATE ******

    Jon started holding his urine, instead of peeing continuously. He doesn't pee for 2-5 hours, then he unloads 250-350 ccs of urine at once. This is atypical of an indwelling catheter, which is constantly emptying the bladder. No distention or swelling in his gut. SATS and heart rate are perfect. His urine output is normal, about 1800 cc/24 hours. But he voided 2700 cc the day before he started retaining his urine for hours.

    Yesterday he only had 5 hours of sleep. Was awake until 4 a.m. then a huge pee woke him up at 9 a.m. We "bedded him down" at 11:30 last night, and he was awake until 5 a.m. this morning. Then he slept all day until 5 p.m.!!!

    He didn't void from 8 a.m. to the pee, which woke him up at 5 p.m.!!! This put me into stress mode overdrive. Still he maintained good vitals and no distention.

    It was too late then to do the pillows and leggings, etc. So, we'll get back on track tomorrow.

    When we laid Jon flat in his bed to pull him up, we were stunned. His left breast is nearly flat, where it had been full, causing a crease on the side. His left torso is significantly reduced, and we can see his hip now, where before his belly lay over the top of his hip. His feet and calves are pliable, not shiny and stretched.

    His trache is clear for the first time ever! No rattling, no coughing, no taking off his plug, no suctioning. It's absolutely amazing! Jim and I are in awe!

    I took a break from writing this to check on Jon and spend time with him, and he produced another 400 cc, so he's moving it now. I asked him how he was feeling, and he said, "Fine!" and grinned. He hasn't said that for such a long time.

    While we were tending to Jon, Jim found a PBS program about the Big Bands of the 1940s. We were singing to Jon, and he was loving it. Big smiles and laughter. When "In the Mood" was played, I took Jim's hand, and he obliged, and as exhausted as we are, we danced. Gently and only for a couple of minutes. The last time that I danced with my dad was at my cousin's wedding in 1990, a few months before he died, to "In the Mood."

    Earlier in the day, while waiting for Jon to wake up, Jim and I watched the Ohio State/Navy game in our office, taking turns checking on Jon every 15 minutes. Buckeyes won. Good omen.

    Right before Jim went to bed to sleep for a few hours, he and I enjoyed a personal, inside joke moment, which had both of us laughing so hard we couldn't catch our breath for a minute or two. We'd wipe the tears from our eyes, look at each other, and start guffawing again. It was a wonderful release.

    I emailed Jon's nurse and PT today with all of the news and asked advice about the intermittent urination. But Jon is FINE, and that is quite obvious to us. PT will be here Tuesday, following the Podiatry Gals. And since they deal with Jon's feet, and always closely examine his ankles and legs, and his skin, they will be looking at this remarkable fluid reduction and ~ I'm guessing ~ they'll be thrilled.

    Relieved. We are relieved. And grateful. So very very grateful.

    We're in it to win it. And so far, it appears that we are ahead.

    Thank you all for your prayers and support!



    Love & Light,

    Rose

    (I found and now I can't stop using it! )
    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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    Thumbs down And... Step Back ...

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

    I spoke too soon! Jon slept 10 1/2 hours today, and, this morning, in less than an hour, his SATS went from 92 to 77, and his heart rate went from 79 to 100. Some swelling has returned, as compared to yesterday.

    He held his urine from 7:30 p.m. last night to 5:30 a.m. this morning. Then his output increased, albeit not continuously, so we were a bit relieved. We had to wake him, because of his low SATS, and all day and evening, we've been removing his trache plug allowing him to cough and clear any obstruction there. SATS come up, but they don't stay up.

    Pillows are in place, leggings are on, and skin movement was performed today, so we hope that by tomorrow, Jon will return to his status of yesterday. We missed one day of therapy, opting for Jon's need to sleep to prevent a seizure. And that seems to have been a set back.

    PT will be here Tuesday, and he will provide us with an explanation and insight, I'm sure. Meanwhile, we're befuddled and doing our best for Jon. Still, it is only one more day, and we can handle 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.

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    Rose I'm so sorry to hear of this setback. Two steps forward one back is how I feel sometimes but in the end it means progress. It's great that you have PT tomorrow at least you can get some answers hopefully. It's a little less stressful knowing that at least someone will be there with support and your not alone. Praying for a better day today. Keep us posted.
    Mary Grace

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