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Thread: What Is Next For Jonathan?

  1. #41
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Hugs to All)))))) ~

    Here's the email I just sent to Jon's wonderful GI doc, who visits every year to change Jon's G Tube. We are at our wits' end, and we need professional help.

    Dear Dr. C

    Monday 11/13 at 1:00 a.m., Jon vomited after his belly blew up with air and fluid over a period of 2 hours. This has happened many times in the past several years, but not within the last year. He vomited again at 2:30 a.m. We kept him upright and captured his vomit in a basin. We suctioned after he vomited in case he aspirated.

    We held his G Tube formula and gave him 60 cc water flushes via syringe hourly. We released gas via his G Tube, and he produced gas through his colostomy.

    Gradually his belly softened, and the distention lessened. We returned him to his formula at 45 cc/hour, until he was able to take the full 90 cc/hr.

    Jon was fine, until Tuesday 11/14, in the evening, when he began hiccuping. We tried a remedy, which has always worked with him: sugar on the back of his tongue. It did not work. We’ve continued to try this, as well as a little water on a spoon given orally. It’s not working. Two days later, and Jon is still hiccuping.

    His nurse suggested that we turn him side to side every hour, but Jon can’t lay on his side due to his hips, and Jim and I aren’t strong enough to turn him, especially not that often. He is very heavy due to lymphedema. Our friend, who is Jon’s age, visits at least twice a week to turn Jon, so we can change linens and bathe his back and apply creams and wound care pads.

    In fact, it was when we laid Jon flat on Tuesday evening to turn him that we noticed the hiccups.

    JON’S VITALS

    SATS: 97 HR: 81 TEMP: 97.6 Good urine and bowel output.

    Jon's nurse changed Jon’s trache on 10/31. No problems there, but we did determine that his collar needed to be tightened, which might account for air in his belly. That has not stopped the hiccups.

    We turn to you for your wisdom and advice. We’ve done all we know to do, and we need your guidance. Thank you so very much.

    Rose and Jim, Jon’s Mom and Dad

    *************************************

    So that's where we are right now. Just waiting for the next problem that arises from constant air getting into his gut with hiccups.

    Jim relieved me at 3 a.m. today so that I could go to bed. Imagine my shock when I woke up and looked at the clock: 10:45 a.m.!!!

    When John arrived this evening to turn Jon, Jim told him that I'd "slept in." John looked at me and said, "Oh, today you made up for ... what? ... 35, 40 or more years?"

    Yep.

    Let's here your suggestions for stopping hiccups. Please. We're desperate!!

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 11-16-2017 at 10:44 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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  3. #42
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    Hmmm not sure if any of my hiccup remedies would work on Jon but I think with hiccups the trick is to get the diaphragm to relax in one way or another. 2 days of hiccups is not fun but at least air is coming out, not staying in y'know? Do the hiccups stop when he sleeps?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  5. #43
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    Oh no I'm so sorry. That must be so uncomfortable for him. Kathleen has gotten some miserable hiccups that sound awful, like a burp and hiccup combined and she gets very frustrated. It takes a while but they do go away. I'll have to try your remedy on her the next time and see if it works. I pray you get some answers or that the hiccups have gone away.
    Mary Grace

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  7. #44
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Question Baclofen for Hiccups

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

    None of my health portal emails went through, and I don't know why. So, now I have to call the health portal people. Add that to my list of phone calls ... ugh.

    Jon is still hiccuping. We did manage to stop them for 1-2 hours at a time with 2 tsp of lemon juice, which we administered orally with a spoon. But it didn't work every time, and we were concerned about acidity. I also tried acupressure on the web between his thumb and forefinger, which did not work, and he didn't like!

    So, I called Dr. C this morning, and he called me back this evening. He prescribed 10 mg of Baclofen every 6 hours for a few days, with a taper schedule. The purpose is to relax the diaphragm. It's a tablet and dissolves in water, so we can give it via his G Tube.

    Dr. C checked for interactions with Jon's seizure meds, he assured me that it was safe for Jon. However, I've looked up the side effects, and they include "difficulty breathing and seizures." YIKES! Jon's SATS are 97 still, thankfully, and we can keep an eye on them, as always, but the thought of his SATS dropping is scary as is the thought of a seizure. Nausea is another potential side effect, and we fear that, because of possible aspiration.

    Dr. C said that if the Baclofen doesn't work, then Jon will likely need to have a CT scan of his chest and abdomen. There could be a pocket of air or an obstruction causing the hiccups. I asked him whether he thought that the vomiting episode, which was forceful and copious, could have been the trigger, and he said, "Very likely."

    He also observed that since this is an ongoing problem for Jon, with fluid in his belly, that the diaphragm could just be weakened from constant pressure. So we must get this fluid overload under control somehow, but it's lymphedema, and that is a tough nut to crack. Our pulmo told Jim, "You'll be chasing that forever."

    Jon is miserable, and he tries to smile and be cheerful, but he just doesn't have the energy. It's so sad, and Jim and I feel so bad for him.

    We agreed tonight that we'd give him Baclofen. We have to do something. So I just gave Jon his first dose. I prayed before I opened the bottle, as the pill was dissolving, and before and during pouring it into his syringe. Please let this be the right thing for Jon. Please don't let him have any adverse side effects. Please let this work to stop his hiccups. PLEASE.

    Of course, it's Thanksgiving, and we always have a crisis on the holidays. We have a remarkable history of this, in fact. May this one be the exception. I don't think any of us have the energy for being in the hospital right now. The stress is overwhelming for all of us. It's been a very stressful year.

    On Saturday, we were watching "Night of Too Many Stars" on HBO, a fundraiser for Autism. I had spent 3 or more hours on the phone that day with our internet provider and Apple, because we lost access to our email. The problem is still unresolved, and I have to call Apple again and spend more hours fixing it.

    As we listened to the final song of the show, I burst into tears. I just felt utterly spent. So exhausted, so worried, so fearful, so fed up with trying to understand technology on 3 hours of restless sleep. Jim and I are working as a team at night with Jon, so neither one of us is getting enough sleep. I went to bed at 4:30 this morning, and Jim came up 10 minutes later to tell me that Jon was asleep. I woke up at 7.

    Listening to this song, and this wonderful young woman singing and playing the piano, just tipped my scales. The tears cascaded. Jim comforted me. He made dinner for us. He's amazing.

    Here's the song:

    https://www.youtube.com/watch?v=Da7J_SrjBj0

    I know that I don't have to request your prayers, and thank you all in advance for your healing energy and loving thoughts. Please focus on Jon. He needs all of us right now.

    Thank you all so much. God Bless You ~

    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. #45
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    I will be praying, especially for no side effects. In regards to Apple, I know the feeling. I'm trying to figure out why adding open captions in iMovie is so dang hard LOL. Are you using a iCloud email or using the Mail application on Mac??? Maybe I could help. In my experience, the best bet on a Mac is to use a service like gmail or yahoo. If you must use a Mac email, iCloud is better than the Mail app. If you don't want to call Apple try their chat support online. The chat people saved my butt while I was editing my films on Mac a few times.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #46
    Distinguished Community Member agate's Avatar
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    Rose, I'm so sorry I haven't kept up with posts on the board in the past several days. I've been upset about a few things and just haven't felt up to much communicating.

    I'm so sorry Jon has been suffering so much. I find it hard to tolerate even a short spell of hiccups. Days of them must be very exhausting.

    I don't know if he can sip water at all? My surefire cure for hiccups, and it has never failed me since I first heard about it when I was about 10 years old, is to put a handkerchief over a glass of water and drink the water through the handkerchief as it is stretched over the top of the glass.

    I've always used a tumbler but it might work as well with a cup or mug. I don't know why it works. I think it somehow alters your breathing enough to stop the hiccups.

    But Jon's situation may not be as simple as my common hiccups. I hope that the Baclofen will help.
    Last edited by agate; 11-20-2017 at 11:14 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  13. #47
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    Prayers for Jon, for the hiccups to stop, and that he has no ill effects from the med. Also sending up prayers asking for strength for you and Jim. I pray that you have a peaceful, uneventful, restful Thanksgiving and holiday season. You both deserve it.

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  15. #48
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    My dearest Rose, has the baclofen worked? It's a drug that Nick cannot live without - I hope Jon has no side effects! Nick has never had side effects - it has been his life saver. There are some weird things here, but ... http://www.medicaldaily.com/hiccup-c...esearch-281620
    Maybe pulling on Jon's tongue might help (if he doesn't have a bite reflex)? Praying for you and Jim and of course Jon and Angel Michael. xoxox
    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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  17. #49
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    Thumbs up

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

    Within 2 hours of Jon's first Baclofen dose, his hiccups were GONE!

    Although he wasn't hiccuping at midnight, I gave him his next dose, and Jim gave him his dose at 6 a.m. And now Jon is Rip Van Winkle! He's been asleep since 1:30 this morning (it's now about 6 p.m.). We woke him at noon to suction, as his SATS were dropping into the mid 80s. He stayed awake for about an hour. We just suctioned him again, and he essentially slept through it.

    In addition to the Baclofen, we increased Jon's Dilantin and Depakote to stave off seizures. So, Jon is basically in drug-induced Sleepyland.

    Nary a hiccup in site. So, we've skipped the noon dose and will skip the 6 p.m. dose as well.

    This is a relief, of course, in many ways. We were praying that he wouldn't need to go to the hospital for a CT scan, and for whatever might be needed based on the scan's results. It would seem that my theory that it was provoked by his vomiting is accurate. But that's just for now. Things can always change on a dime.

    funnylegs4 ~

    Thank you for your prayers and offer to help with our mail problem.We use Mac mail, and have never had a problem before. The issue pertains to the ISP letting Apple's certificate to provide our software expire. It is not an easy fix.

    The Apple rep called me yesterday evening to ask if I wanted to work on the fix, and I told him that we'd had a crisis with our son. He was very compassionate and told me that he was available Monday, Tuesday, Wednesday and Saturday every week. I also have to upgrade our OS, because I've let that slide, as well as back up the computer. It's a lot of work. At least an hour, probably more.

    We have a yahoo account, but yahoo was recently hacked/breached, and I'm reluctant to trust any web-based email now. Plus, we've had the same email address for 19 years on all of our Macs.

    Mary Grace ~

    Thank you for your prayers. The sugar on the tongue used to work for Jon and Michael. The lemon juice worked this time, but only briefly. When I get the hiccups, I wait for the hiccup and immediately take 10 quick sips of water, swallowing after each one. That always works for me, but Jon can't do that.

    agate ~

    Please don't apologize, my friend. I know you're working your way through many things these days. I understand and pray for your strength and healing.

    Your technique for stopping hiccups is one I found in my Google search, and prior to that I'd never heard of it before. I'm glad that works for you, and I hope you never get hiccups again, because yes, they can be annoying, and sometimes exhausting.

    nuthatch ~

    Thank you for your prayers and positive energy for us. We are determined to celebrate Thanksgiving and Christmas at home together. We are keenly aware that we don't know how many more of these holidays we will have together.

    I typically spend way too much time shopping on line for our godchildren, nurses, toenail gals, friends. Then, I wrap the gifts, put them in cute holiday bags, and it takes me hours and hours and hours. Not this year. Downsizing.

    My focus is on US. Decorating our home, giving meaningful gifts to each other, spending time enjoying ourselves. For Jon, we ordered a rotating CD/DVD/Blu-ray tower, which should fit perfectly in the corner of his room. Jim and I will rearrange Jon's room, organize his gigantic collection of DVDs/Blu Rays, and redecorate. We have to keep many things the same, because Jon likes his stuff and likes to discuss them with us.

    Jim is going through catalogs and finding little things he'd like, and I'm ordering them. Figgy pudding, German chocolates, mincemeat pies. He promises to be sensible! And I promise not to eat any of it, as I don't need the extra pounds.

    In lieu of our large and lovely artificial tree, which we ordered in 2015, and didn't put up last year, because Jim was too ill, we will use an iron ornament tree, to display our ornaments. Our tree is too heavy and takes hours to fluff and decorate. We just don't have that in us. But we do want to look at all of our special ornaments, which we've collected through the years. A 3' iron tree in the living room, where Jim's futon nest and medicine chest are, and a 5 ft tree in Michael's room (once was our family room). Jon has a couple of small trees, which we put on his shelves.

    We are going to watch Christmas movies, sing carols, dance, laugh, prepare delicious healthy meals, watch football, and love each other.

    And as soon as Jon wakes up, we'll get started!

    This Thanksgiving, we give Thanks for all of you, who are following our journey, loving, praying for and supporting us. 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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  19. #50
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    Default Happy Thanksgiving!


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

    We hope youíve all enjoyed a beautiful day with your loved ones, giving thanks and celebrating.

    Hereís how it went down in our house:

    Yesterday, the hiccups returned, and we gave Jon one dose of Baclofen. Two hours later, the hiccups subsided. John came over, and we just turned Jon enough to change his under pad and clean his back. No linen change, because Jonís belly blows up when he is prone.

    We gave John his birthday gifts, laughed over the goofy musical card, and sent him on his way with Thanksgiving floral arrangements for his wife and daughter.

    Jon fell asleep at 12:45 a.m. Jim slept. I watched the new Netflix Barbra Streisand concert (incredible and wonderful) in 15 minute intervals, checking on both of them, giving Jonís meds, returning him to his formula feeding, etc. I got to bed about 3:30 a.m.

    This morning, we watched Macyís Thanksgiving Day parade. After that, we watched the dog show.

    For brunch, I made mushroom omelets, veggie sausage, canned organic baked beans, hashed browns, and toast.

    Jimís headache was back, and Tylenol wasnít helping. He describes a black wave coming over the top of his head. Heís taking regular strength Tylenol, so I gave him another caplet. He fell asleep for 4 hours, woke up headache free.

    Jonís urine output is excellent, but heís putting out blood and gunk. We had to irrigate the cath yesterday, because the output was very slow. His SATS are fine at 94, but he has a temp of 101*. So, we worry about infection Ö somewhere. He has watched movies in between naps all day.

    When Jim woke up, I prepared the potatoes for his ďfamous English roasted potatoes.Ē I offered to make mashed potatoes, but he insisted. I also cooked a Field Roast Celebration Roast, with onions and celery and the traditional oil/broth/parsley/sage/rosemary/thyme baste. Steamed green beans almondine. We were determined to have a semblance of a holiday meal. It was delicious.

    We were home together, and that made the day perfect.

    We give thanks for you, for your prayers, love and support.

    HAPPY THANKSGIVING!

    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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