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Thread: Jim's Update

  1. #541

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    It sounds like you've had a good week. That makes me happy!

    May I ask why you are reluctant to use Lasix with Jon?

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  3. #542
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((callyflower)))))) ~

    We gave Jon lasix at home in 2009, and he had several seizures. It interacts with Dilantin, as do most drugs, including antibiotics.

    Even with a potassium ďchaser,Ē Jonís potassium levels drop with Lasix.

    If Jonís urine output is increased suddenly and significantly, his already low sodium levels drop, along with his BP.

    Most of Jonís ICU intensivists (also pulmonologists) are extremely hesitant to give him Lasix, even when Jon is third spacing and has 60 lbs of fluid in him. Of course, in ICU, Jon is always on several antibiotics and other drugs, so that is a factor. But the docs also worry about kidney failure.

    Doctors will not prescribe Lasix for home use, and we donít even want to give it to him, after the 2009 seizures. Jon is complex and fragile.

    Weíre seeing a slight improvement using the compression tubes. We may have to step up the compression a bit, but weíre taking it slow, because too much compression pushes the fluid to his gut and lungs. Itís a delicate balance.

    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. #543

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    Thanks for the reply, Rose. A delicate balance indeed. With mom, they would give it for CHF and it did do the job. Seizures seem to complicate everything in life.

    Hope Jon's newest wound heals quickly.

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  7. #544
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((Hugs to All)))))) ~





    ...
    Jim brought home a kit to take stool samples (I assume for occult blood). This is the first time that testing has been offered. Itís probably just protocol. ...

    Rose
    The stool sample kit may be like the one I receive from time to time--I believe I get it annually. Yes, it's a routine fecal occult blood test and many doctors are opting to use that instead of putting their patients through colonoscopies.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #545
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    ((((((Hugs to All)))))) ~

    callyflower ~

    Seizures do complicate everything. EVERYTHING. And his seizure meds just add to the complications.

    Thanks for your good thoughts about Jon's newest wound. He used to have perfect skin. It's so disheartening.

    agate ~

    Yep, that's what it is. My guess is that Dr. K just wants to make sure that Jim isn't bleeding internally. Our PCP tested Jon and Michael for occult blood, because of chronic anemia caused by Depakote. Jim is anemic. He also has diverticulitis.

    I told Jim that we would read the instructions and do the test together. We have until 6/20 to collect the samples.

    RA flare side effects hit a day later this time. Jim woke up with pain in assorted joints. He took 5 mg Prednisone, but when that didn't touch the pain, he took another 10 mg.

    I was excited about the Triple Crown race today. Jon became bored after an hour of the pre-race stuff, and Jim fell asleep right before the race! So, I watched it by myself, silently rooting and cheering for Justify, who won it wire to wire. This is the only time of the year, when I'm interested in horse racing ~ the Kentucky Derby, Preakness, and Belmont Stakes. I don't bet, of course.

    I love horses. I grew up around stables, and I rode with a friend, whose family had 3 horses. Horses are so smart and strong. And every horse I've ever met was friendly and loving.

    The 52 year old jockey, who rode Justify, was stroking Justify's mane prior to getting into the gate and while waiting for the gates to open. After the race, he stroked Justify's mane and kissed and patted him. Justify was calm and seemed proud, but also a little like, "Yeah, I won. I knew I would. Piece of cake. Next race, please."

    I offered to make us a Belmont Jewel (drink): bourbon, pomegranate juice, lemonade, ice. I would have only used a drop of bourbon, which has been sitting in our cabinet for 20 years! Probably not even any good now. It's a good thing I didn't make it, because Jim couldn't stay awake anyway!

    I'm trying to get some serious house cleaning in, since I expect Jon's GI to visit next week. Not enough time to put down the floor in the kitchen and paint the entire house, unfortunately. But he never goes into the kitchen, so it's fine.

    Hope that everyone is enjoying a lovely weekend with nice weather.

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 06-09-2018 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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  11. #546
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Thumbs up Happy Father's Day!

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

    Screen Shot 2018-06-16 at 5.17.30 PM.jpg

    HAPPY FATHER'S DAY
    TO ALL OF OUR CN/BT DADS!

    As you know by my signature, Jonathan, Michael, and I believe that Jim is ďthe worldís most wonderful Dad.Ē We have 26 years of memories to support that belief.

    From the first day we met, when Jim drove up to our front door to transport Michael to school, to this day, Jim has devoted himself to caring for Jon and Michael.

    He installed Pergo floors to make it easier and safer to use their wheelchairs and walker. He built ramps and an accessible deck and added an altar for our wedding, assembled hospital beds and all other equipment, as well as furniture. He custom built a trailer to hold the boys w/cís, feeding seat, supplies, and our luggage, so that we could take a 2 week vacation in Utah. Everywhere we stayed, Jim unloaded and loaded all of the trailerís contents.

    We took day trips, went out to breakfast and dinner at restaurants, to concerts, Disneyland, the fair, weekend getaways, and we entertained our friends in our home for as long as our boys were able.

    Jim went to every doctor appointment, every dental appointment, and attended every social service case worker meeting in our home. When either Jon or Michael were hospitalized, Jim stayed home so I could be at the hospital. Eventually, we established a day/night shift at home, which translated to hospital stays. I am day, and Jim is night. So every night, he sat beside his son in ICU, interacted with the nurses, techs, and physicians, and advocated for his son, comforting and loving him so that he was not alone.

    In the process, Jim learned medical terms and conditions, how to read and understand the monitors and blood work results. How to adjust seizure med doses, how to deep suction through a trache, how to irrigate an indwelling catheter, when blood is gushing through it, how to do percussion and breathing treatments, colostomy care, wound care. The list is endless.

    Jim has been through every seizure, every surgery, every ICU stay, every crisis with the System, every battle we have fought.

    And Jim was beside me with Michael, when he passed, and he held me up during that entire ordeal and the difficult years that followed. We probably hold some kind of record for the number of times we knelt together in the hospital chapel praying for our precious sons.

    Now, as Jim fights his own battle against cancer, he is still here caring for Jon and helping me. However weak or fatigued he is right now, he is still endeavoring to help me and spend quality time and caring time with Jon. We all say ďI love youĒ so many times every day, itís impossible to estimate the total.

    When Jim and I met in 1992, I was a fiercely independent woman, believing that I could continue indefinitely taking care of my adult sons. Of course, God disagreed.

    He sent me this handsome, strong, buff, kind, loving, gentle Prince on a yellow bus. And added bonuses of a sense of humor, intelligence, wisdom, and shared values. And, he can cook! And does the dishes!

    Is it any wonder that I fell in love with him upon first sight?

    On Jimís first Fatherís Day with us, Jon and Michael gave him a small tapestry pillow with the statement: ďAny man can be a father, but it takes someone special to be a Dad.Ē

    In the truest meaning of the word, Jim is ďspecial.Ē

    If I were able to give Jim any gift in the Universe, it would be many more Fatherís Days with us.

    HAPPY FATHERíS DAY JIM! YOU ARE THE WORLDíS MOST WONDERFUL DAD!

    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. #547

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    Beautiful!

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  15. #548

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    Dear Rose,

    Beautiful words for your amazing Jim.

    Marcie

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  17. #549
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    Happy Father's Day to Jim! And your beautiful family Rose!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  19. #550
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    ((((((Hugs to All)))))) ~

    Jim had an Opdivo infusion today, and all went well.

    He now parks the van at the Medical Office building and uses the above ground tunnel to walk to the hospital. He says he enjoys walking, and he does have more energy today. So, heís going to try to commit to walking every day. Weíll see.

    Jimís primary side effects during the last 2 weeks have been overwhelming fatigue and super dry mouth. His infusion nurse told him today that this is part and parcel with Opdivo. Jim says that heís fine with it, since these are really innocuous side effects on the long list of Opdivo side effects (including death).

    Unfortunately, we learned yesterday that Jimís MMJ dispensary is no longer serving our area. Apparently, the new adult recreational use laws are impacting MMJ dispensaries, and the MMJ dispensaries have to fill out more forms and get more official licenses. Itís complicated, and of course, it is impacting patients, like Jim, who depend upon their medications.

    One of the items Jim wanted to order is the ďjolly rancherĒ type candies, which have 10 mg of CBD oil. So far, these are the only things that help Jimís dry mouth.

    So, I searched to find another dispensary on the internet, and I finally located one close to us. When Jim called, the man, who answered, said tersely, ďSend us an email with your rec cardĒ and hung up. So, I sent an email to them, and we still have heard nothing.

    While there are a multitude of dispensaries, they all carry different products. And they are all going through this bureaucratic process right now, so only some are allowed to serve certain areas. I never imagined that legalizing recreational MJ would so severely impact patients, who need it as medicine. But here we are.

    Jim said he could eat spaghetti tonight, so I made a big batch full of yummy veggies and Field Roast Italian Sausage. His appetite has been waning, and his taste buds have been failing him. Heíll say, ďThat doesnít taste good to me. I donít know if itís me, or if something is wrong with it.Ē Itís probably him.

    We still havenít heard from Jonís GI, so I guess Iíll have to gently remind him that we need his help as soon as itís convenient for him. I fear the GTube coming out, because I know that the mushroom holding it in has disintegrated. It always does after a year.

    We hold onto hope that Opdivo is knocking that cancer for a loop, and that Jim will be able to withstand the fatigue and dry mouth, with no further side effects.

    Oh, and for Fatherís Day, we ordered him a pair of slippers. It will be nice not hearing his clunky walking shoes on the laminate floors. I hope they fit and are comfortable for him.

    Next stop: CT scan and brain MRI on 7/2. Scanxiety Phase will begin in 5, 4, 3, 2, 1 Ö

    Thank you all so much for your support, love, prayers, positive, healing energy, sharing of experiences, and being here with us on our journey. We love you and pray for you and your loved ones every day. You are a blessing 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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