😢 ROUGH DAY IN THE HOSPITAL 🏥 (1.23.17)

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  • čas přidán 23. 01. 2017
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Komentáře • 1,1K

  • @purrbugaloo
    @purrbugaloo Před 7 lety +348

    I'm worried about Mary. She handles stuff with so much grace, but this doesn't sound like it's going well at all. Can't wait for the update tomorrow on the new formula. Sending comfort and hope, and wisdom for the doctors. Miracles happen. Let's send some to Mary!

    • @melmelbug
      @melmelbug Před 7 lety +19

      I'm worried too :( And sad. Much love, grace, and God's speed to these sweet Angels! Started watching last year when facing my own port surgery, and went back and binge watched from the beginning while getting my infusions every other day. I feel like I know this sweet awesome family so well. I want nothing but peace and happiness for them, and all of us. Xx

    • @contrapasso
      @contrapasso Před 7 lety

      SAME

    • @elliem.8537
      @elliem.8537 Před 7 lety +2

      purr bugaloo I am sending all the love possible!!!

    • @arlyandjay
      @arlyandjay Před 7 lety +2

      I'm worried also

    • @lildeegurrl
      @lildeegurrl Před 7 lety +18

      Part of me is screaming "Take that tube out of her!" its almost like her body is rejecting it. I hope they figure it all out quickly.

  • @griffin7700
    @griffin7700 Před 7 lety +106

    After being kicked out of my private school because I was in and out of the hospital I have finally completed my courses early and am set to leave for college in the fall

    • @xandrayoung9186
      @xandrayoung9186 Před 7 lety +7

      Griffin Black congratulations!!!!!!!!!! I recently went through something similar and my graduation was in question, but now I'm officially back on track and have been accepted into my number one collage. So congrats I so get that feeling!!!!

    • @craabraabc7254
      @craabraabc7254 Před 7 lety

      Good for you Anna Young !!! That's a big accomplishment and you should be VERY proud of yourself !!! Congratulations

    • @CelestaII
      @CelestaII Před 7 lety +1

      Congratulations! That is so awesome! 🎉

    • @cl4za
      @cl4za Před 7 lety +3

      Griffin Black yay!!! 🎉💜

    • @natalieh5843
      @natalieh5843 Před 7 lety +3

      Griffin Black Yay!

  • @mindbodyandsoul.myjourneyt9797

    Feel so bad for Mary it seems she never gets a break,, Continue prayers for her!

    • @WyntersFrost
      @WyntersFrost Před 7 lety +19

      Amen to that... feel so bad for her.. Sure breaks my heart to see her in pain like this.. sigh. :(

    • @virginiamangelli8599
      @virginiamangelli8599 Před 7 lety

      Dawn's New Light .

  • @KristinaMarie96
    @KristinaMarie96 Před 7 lety +5

    Someone already probably said, but the jejunum is the first section of the small intestine, around the area where your pancreas connects to the small intestine. I'm a nursing major, so I just want to say thank you for being willing to put your life out there. It allows me to see why I want to help those that are in hospitals as patients and as families, and it is encouraging to see you both as a Christian couple who is trusting God with what is happening. Thank you very much.

  • @judyriechman541
    @judyriechman541 Před 7 lety +114

    In my opinion, it is time for the docs to check what damage was done to make you so sore. I would think it would be healing by now. Just my opinion.

    • @kellymarie3078
      @kellymarie3078 Před 7 lety +11

      Judy Riechman
      I had a NJ tube for 1 1/2yrs straight, and unfortunately the sore throat thing is just kinda a fact of living with it sometimes. It's by no means fun and hurts like hell, but on a typical case by case basis there isn't much of anything the physicians can do. Not saying she shouldn't mention it to them or they shouldn't take a further look of course, just that it's unfortunately a very common and unpleasant side effect. I've

    • @debradonley3825
      @debradonley3825 Před 7 lety +7

      I had a friend who had a feeding tube and as far as I know, she was always in some level of pain. After a year she said it faded a bit but never went away. She says she got used to it.

    • @BhappyD
      @BhappyD Před 7 lety +21

      Unfortunately, this is normal. I have had many NG and NJ tubes in my life, one time being for a very long extended amount of time before having a surgical J-tube placed. The pain never truly goes away, you are always in discomfort. You get more used to it and your throat and nose begins to build up a resistance to it, but that can take months. Especially in the beginning month, EVERYTHING hurts. Moving, breathing, swallowing, talking, drinking, eating, and the list goes on. In my opinion, it's even worse than a severely bad case of strep throat. And it gets worse before it gets "better". It's not a fun experience, and my heart truly hurts for Mary because I have so been where she's at right now. 😔 God bless! 💗

    • @tiff2106
      @tiff2106 Před 7 lety +6

      It sounds very tough but for me it would be very reassuring that this is a common thing, I hope Mary reads this and it helps her!

    • @SharpLife4
      @SharpLife4 Před 7 lety +3

      Brittany and her immunity is probably down a bit taking her longer to heal

  • @christyinthecarolinas
    @christyinthecarolinas Před 7 lety +119

    It breaks my heart to see you in so much pain. I know what it's like to live with pain and it sucks! The helpless feeling is horrible. I am so sorry! youre in my prayers girl! xoxo

    • @sneepsnorp1404
      @sneepsnorp1404 Před 7 lety +43

      I know! It hurt me so much when she started to cry. That is the cry of exhaustion and pain. We know it very well.

    • @dontmindme9097
      @dontmindme9097 Před 7 lety +8

      Same. Hugs and prayers

    • @tashiamavretic2262
      @tashiamavretic2262 Před 6 lety

      Christy In The Carolina's nfjffjgjhjjghjhjghghfjgjhjgjgjkkfk

    • @brooketodd2822
      @brooketodd2822 Před 5 lety

      Chjikiuiwjiskoopqpoo quits on

  • @sneepsnorp1404
    @sneepsnorp1404 Před 7 lety +21

    Seeing you cry of exhaustion made me tear up. It is one of the worst feelings. I am young and very chronically ill as well and find myself in the same position all the time. Stay strong Mary. You inspire me to be strong and to help others.

  • @JodiBeans411
    @JodiBeans411 Před 7 lety +9

    I found myself in tears when you were struggling with so much pain, Mary. I am praying for you and Peter daily. God Bless you. I am in a wheelchair most of the time, and my mantra is "Fly when you think you can't walk" thanks to you. I have indeed taken a few steps with my walker in the past few days. 🌼🌹🌸🌼🌹🌸🌼🌹🌸🌼🌹🌸

  • @rolanddawson3657
    @rolanddawson3657 Před 7 lety +26

    Keep fighting, love. So many of us have you in our prayers. ❤️

  • @AwakeLazarus
    @AwakeLazarus Před 7 lety +95

    Try melting a piece of chocolate in your mouth, it coats your throat better then syrup and has no meds in it... I'm Canadian and soreness in my throat is a fact of winter life around here.

    • @purrbugaloo
      @purrbugaloo Před 7 lety +6

      What an interesting tip!

    • @suzieannie98
      @suzieannie98 Před 7 lety +6

      Warm honey is always soothing to my sore throats.

    • @16050390
      @16050390 Před 7 lety +2

      might help, but also with the nj tube it's just going to hurt every day no matter what you do probably. Sadly she will just have to get use to it

    • @DougPaulley
      @DougPaulley Před 7 lety +1

      giggles and hugs I think this may be more for stomach upsets? it works for travel sickness for me.

    • @madidewitt6224
      @madidewitt6224 Před 7 lety +3

      Dark chocolate

  • @PlatinumFairy
    @PlatinumFairy Před 7 lety +81

    I feel like God is constantly guiding me to the Frey life in my most difficult days. I've suffered from widespread chronic pain and fatigue for a few years and that can really take a toll on my mental Heath. This month I've been struggling with infections, coughing, and extra pain. I light up when I see a new video fro you two. I've never been to a channel where I watch every video, and relate to the pain, the little joys, the complex relationship with partners, and the love that refuses to leave. I've cried with you guys, I've laughed, and Mary has teaches me daily that you can still have a happy meaningful life with chronic illness. I know you are hurting Mary, and I'm so sorry. I thank you for being so honest with your emotions; it makes me feel better when I have to cry. I love you guys. 💖💕

    • @maydaylin100
      @maydaylin100 Před 7 lety +9

      Overactivedreamer I also struggle with chronic fatigue and fibromyalgia and kidney issues... There's not a day that's goes by that I'm not in severe pain so o understand you and Mary perfectly. I also had a Feeling tube for quite a while and it was so traumatic and painful. Right now I'm crying due to the excruciating pain I'm having and also I'm frustrated. Nothing I take helps and nothing I do... But even tho I'm sad and crying I feel this peace inside of me and joy that's difficult to explaind... I hope tomorrow is a better day for you and Mary and me as well 💕😘💕

    • @arlyandjay
      @arlyandjay Před 7 lety +4

      Same here with Fibro and blessed extras. Weird how we all found her and have the same thing

    • @armywife4life78
      @armywife4life78 Před 7 lety +2

      I have fibro, chronic fatigue, Epstein Barr, and pernicious anemia. I'm glad to have found Mary. She gives me strength.

    • @MountainGirl7771
      @MountainGirl7771 Před 7 lety +2

      Same. Been watching their vids the last two days and I've been in bed sick. Not sure if it is because of the meds I'm on or if it is a new Lupus symptom I'm getting.

    • @Joy.Elizabeth
      @Joy.Elizabeth Před 7 lety +4

      I'm right with you ladies ❤ I have 24/7 non stop chronic pain for many years frm stage 4 endometriosis, fibro, sbo, and have many others like cfs, Ibs, hyperthyroidism n fighting issues w a large thyroid nodule compressing my trachea among other things so I totally understand pain and that level of exhaustion n just wanting a minute of relief :( I feel so much for Mary and for all of you knowing how awful n difficult it is. I agree Im so grateful that God brought me here to the Frey Life I look forward to the new videos everyday and no matter the video Mary,Peter, n Ollie always seem to bring me hope and laughter!
      Thank you Frey's!
      And many prayers for all of us that live with chronic pain n illness, may God give our bodies relief and refresh our minds and spirits! Amen ❤💜💛

  • @lindalovescrafting4551
    @lindalovescrafting4551 Před 7 lety +12

    So sorry Mary is in such pain. Praying much, for both of you.

  • @ashlynbeardd
    @ashlynbeardd Před 7 lety +10

    You're so inspiring! Hope you start feeling better soon! Keep fighting! You're amazing

  • @josiem4562
    @josiem4562 Před 7 lety +3

    You are adorable, stay strong my dear. You are an inspiration.

  • @meganstiles8325
    @meganstiles8325 Před 3 lety

    Oliver laying with her is the sweetest and you're such a blessing for Mary as her husband. I send you peace and healing and love.

  • @erinburrington4435
    @erinburrington4435 Před 7 lety

    Prayers & Hugs! Hope you feel better tomorrow!

  • @MaFFilon
    @MaFFilon Před 7 lety +4

    I have no words. I think you are the most incredible people in the world. Wish you all the best. Lots of love and a special hug for Oliver! ❤️

  • @Holly3
    @Holly3 Před 7 lety +5

    I watched this video earlier today and I just had you on my mind. Hoping you were feeling better, if not physically than at least spiritually. I enjoy you and your husband's positive spirits no matter the circumstances. Also Oli's stolen my heart 😍 and I say it at least once a day 😘 Fly when you think you can't walk ❤️❤️

  • @nicpeti3383
    @nicpeti3383 Před 7 lety

    Stay strong! Keeping both of you in my prayers!

  • @lottiebastille3162
    @lottiebastille3162 Před 7 lety

    I am sending so much love and many warm hugs! Thinking of you!!

  • @LittleBohoChick
    @LittleBohoChick Před 7 lety +6

    Oh Mary! You so don't deserve this. You are so strong, so beautiful and so brave. We all love you and pray for you . You are the strongest person I "know" 🙏🏻

  • @davedalane6505
    @davedalane6505 Před 7 lety +4

    God Bless both of your hearts... I can't watch without crying and in the midst of it asking God to put his healing hand on you, and to give the Drs. Wisdom on what the next step is. I think of you so often. Peter you are a wonderful man. God so has his hand on the both of you. Hugs, Daveda give Ollie a hug

  • @cheryl_Anne_02
    @cheryl_Anne_02 Před 7 lety +1

    Oh Mary ! You are such a warrior.. I am praying for comfort and that your body can absorb the new formula❤️

  • @christi3411
    @christi3411 Před 7 lety +2

    This is such a difficult journey! I am praying for both of you daily!!!

  • @Thenebraskahanger
    @Thenebraskahanger Před 7 lety +5

    We love you Mary. Keep fighting. Love to the whole family.xo

  • @lovin.my2.yorkies823
    @lovin.my2.yorkies823 Před 7 lety +2

    Praying for you guys ❤ hang in there!!

  • @learningaswegocitygonecoun6805

    Keeping you in my prayers. Gentle hugs!!!

  • @kristigriffith4471
    @kristigriffith4471 Před 7 lety

    Sending prayers for healing and strength to you Mary. Hoping that you have easier and better days ahead 💐

  • @hearsthewater
    @hearsthewater Před 7 lety +129

    Is it possible that Mary is reacting to whatever that tube is made of? Like perhaps it is irritating her throat? In any case I am praying for y'all!

    • @sarahelizabeth623
      @sarahelizabeth623 Před 7 lety +2

      hearsthewater I had considered that as well.

    • @quietlyobserving6531
      @quietlyobserving6531 Před 7 lety +3

      hearsthewater I wondered the same!

    • @SharpLife4
      @SharpLife4 Před 7 lety +16

      hearsthewater it can actually scratch the throats pretty bad on the way down and her body doesn't heal as quick with everything going on so I would say this is fairly normal

    • @christywright5439
      @christywright5439 Před 7 lety +1

      hearsthewater Good point.

    • @lindseyn.7284
      @lindseyn.7284 Před 7 lety +1

      hearsthewater that's a good point

  • @amytaylor-kramer4019
    @amytaylor-kramer4019 Před 7 lety +3

    Stay positive Mary, you're working and that's what matters!

  • @caylajo5907
    @caylajo5907 Před 7 lety

    I love you Mary! Praying for strength in your struggles

  • @zoey7809
    @zoey7809 Před 7 lety

    I will be praying for you! Hope you feel better tomorrow!

  • @faithdavis7258
    @faithdavis7258 Před 7 lety +12

    I read the comments and everyone has a suggestion, of course we aren't doctors, we just want some relief for Mary . Please Lord have mercy on Mary .

  • @FailuresandFulfillment
    @FailuresandFulfillment Před 7 lety +5

    Hoping Mary gets better soon. Being in pain is not fun and having stomach problems is not fun either

  • @kaijagermain25
    @kaijagermain25 Před 7 lety

    Praying for you Mary! You are so strong and are an amazing inspiration!

  • @alinalacubana.5450
    @alinalacubana.5450 Před 7 lety +2

    Oh, I do hope you are FEELING better today, LOVE AND LIGHT GOING YOUR WAY.

  • @kaylagibson2025
    @kaylagibson2025 Před 7 lety +3

    feel better mary
    im sorry your not feeling great & especially with your pain ( pain is never fun i am in a great deal of pain every single day & i hate it 😯 )
    we all love u
    get better soon !!!

  • @MandieZangora
    @MandieZangora Před 7 lety +24

    I'm so so sorry Mary, I know crappy it is to be in pain and have the doctors not know what to do to fix it and it's just so frustrating and disheartening. I hope that the irritation subsides really really soon and that they can figure out the digestion part of it soon as well. I'm praying for you and I'm thinking about you as I'm running a liter of fluids after throwing up a bunch myself lol #gastroparesissucks but at least we're #portbuddies and we will get through all of this together 💪🏻💜
    Ps, do you think you guys could make a playlist of the music you listen to to get through the hard times? I could really use some more inspirational music to get me through the painful nights lately 💖

    • @WeepingWill0w
      @WeepingWill0w Před 7 lety +7

      Wow, a playlist of music you find inspirational would be so AMAZING!
      I'm sorry you're struggling just now, Mandie. *hugs*

  • @whitneyfranklin258
    @whitneyfranklin258 Před 7 lety

    I hope you had a better day today. Praying for you!

  • @puppygaga1508
    @puppygaga1508 Před 7 lety

    Mary you are the strongest! Sending all my love & prayers to you!

  • @ivyedan7183
    @ivyedan7183 Před 7 lety +6

    we love you Mary olie your sweet hubby

  • @unknownentity7964
    @unknownentity7964 Před 7 lety +4

    I'm sure the prospect of another tube insertion isn't a nice one, but it might be worth asking if they can insert what I believe is called a silk tube. I had a horrible, inflexible plastic-y NJ tube for a long time, doing lasting damage to the cartilage in my nose, and the much softer silk tube was an absolute godsend! I can only tolerate the most basic, broken down elemental formulas too, so don't be afraid to keep pushing to try new feeds if your current one doesn't seem successful

  • @mandisutter8598
    @mandisutter8598 Před 7 lety

    Prayers for relief from the pain! As always you are graceful rockstar through this journey!

  • @LemonCrush1078
    @LemonCrush1078 Před 7 lety

    Prayers and healing thoughts are being sent your way by me and so many. I hope this issue gets resolved and you get home soon, sweet girl.

  • @little2friendly
    @little2friendly Před 7 lety +10

    As a nurse who deals with NJs all the time, I can tell you that it should not hurt like that! I wonder if it isn't coiled in the back of your throat a little and needs pulled back. They should really take you down to fluoro and visualize it or even an X-ray! Get better Mary!!!

    • @ecologist_to_be
      @ecologist_to_be Před 7 lety

      Katie Partsch They've already scanned her in previous vlog

    • @ecologist_to_be
      @ecologist_to_be Před 7 lety +2

      Katie Partsch Also if you read comments from people who've had N tubes you'll see they say it does hurt and Mary has added complications of needing to cough A LOT

    • @little2friendly
      @little2friendly Před 7 lety +4

      Sarah Smith I'm not sure why the attitude.... You are right. She coughs a lot and the tube can migrate over time. Like I said, I deal with these a lot and have seen them, after days, end up coiled somewhat in the back of the throat and need adjusted.

    • @erinhaney7150
      @erinhaney7150 Před 7 lety +2

      Absolutely true. People throw up nj tubes, so I'm sure they can cough enough to wriggle them

  • @kathywaddington1978
    @kathywaddington1978 Před 7 lety +9

    My momma heart is breaking for you, but we have a God who is a great physician. He is hearing your name Mary.

  • @AnneloesF
    @AnneloesF Před 7 lety

    Prayers for both of you! And how lovely and supportive is Ollie?

  • @annitaquiggle4994
    @annitaquiggle4994 Před 7 lety

    Praying, praying for Mary to feel better soon. God Bless.

  • @BhappyD
    @BhappyD Před 7 lety +55

    💗(BTW sorry in advance for the length of this comment lol! But hopefully it's worth reading!)💗
    Oh Mary, sweet girl I can say that I know exactly how you feel because I have been through the same thing. Perhaps this comment will help you in some capacity, or offer you some tips to keep in mind that come from my own experience.
    I have had tons of NG and NJ tubes in my lifetime, one time being for a very long extended amount of time before having my surgical J-tube placed. The pain is truly awful! Way worse than a severely bad case of strep throat (and that's saying something). I think the worst part is that it's inescapable, and makes you want to crawl out of your own skin, as well as having the strong urge to just rip the tube out of your nose, although I highly suggest not doing that. I have been right where you are, reaching that point where all you can do is cry, and that's OK! Sometimes crocodile tears are just what your soul needs. God would not have given us the ability to cry if it wasn't necessary. I was practically begging and pleading for my doctors to take it out and cried even harder when they refused. I kind of laugh at that now, as I am NOTHING like that normally, but hospital stays seem to just push you to the brink and your emotions are just all over the place! The smallest things seem to make me cry in the hospital, and the longer I'm there the worse it gets lol!
    As for some tips that may help you, my first bit of advice is that in addition to taping your tube on your cheek like you already are, ALSO tape it behind your ear! This will secure the tube even more and will further help to avoid any additional tugging or tube movement because I know that ANY movement of that tube hurts like crazy!
    Next, I know that at this moment, EVERYTHING makes your throat hurt. Moving, breathing, swallowing, talking, drinking, coughing (I can't even imagine the added pain the coughing from CF is causing you!), and the list goes on. My advice, try your best NOT to talk and rest your voice. I know it's hard with daily vlogging, but talking is just going to make your already raw throat more sore. Let Peter take over talking to the camera and giving updates for now. It won't be forever, and ALL of us understand, so don't for a second feel bad about that. Your throat NEEDS that rest! Write what you need to say on a piece of paper or dry erase board if need be, I've certainly done that before! When it comes to helping to relieve your throat pain, I found that pain medications like Tramadol and others in its same family seemed to help me the best. As for medicinal things to numb your throat, I personally never found them too helpful, but I know some people get some relief from the throat sprays used for colds etc. There are even prescription strength ones if you feel up for trying them. Aside from medication, I find that cold things like popsicles, sorbet, sherbet, ice cream, or frozen/ice cold drinks can help soothe my throat. Just let it slide down your throat with as little swallowing as possible. Lastly, this may be something you've already discovered, but try to avoid sleeping on the same side that your tube is in. Stepping on it can cause more friction and movement and you will be paying for it when you wake up. 👇👇(Continued Below)👇👇

    • @BhappyD
      @BhappyD Před 7 lety +41

      I would LOVE to lie to you, and tell you that in a few days you're going to be pain free, but I unfortunately just can't do that. I call myself a "realistic optimist" because I always have faith in God for a better tomorrow, but I prefer to face a situation realistically. I can say that it will get worse before it gets better, which in your case is a good thing because it seems to me like you're at that point where you're in the deepest valley. The pain and discomfort never truly goes away, but your throat and nose will begin to slowly build up a tolerance to it. It may take a few weeks to a month, but it WILL get easier than it is right now. That is something I can guarantee! The constant gagging is also completely normal. Not fun, but normal. That will also get better with time, your gag reflex just needs time to adjust to constantly being triggered. Just take this one day at a time, which I know you're good at! And I know you already know this, but I just have to say it, above all else, puppy love is the BEST medicine there is! So hug Ollie extra tight (and Peter too lol! 😉). As always, keeping you all in my prayers! God will pull you through this, just as he does for me! His love and comfort is never failing, even when our bodies are! God bless you guys! 💗🙏 And if you have any questions, I'd be happy to answer! 💗
      Oh! Almost forgot, in regards to the feeding tube formula, after yesterday's vlog, I was already planning on suggesting to you to try a different formula. Do you know if this new formula they put you on is elemental and what is referred to as "pre-digested"? If not, I HIGHLY suggest switching to a pre-digested formula. This just simply means that the formula's nutrients are already broken down, therefore your body's only job is to absorb the nutrients rather than breaking the nutrients down itself. There are MANY different types of elemental/pre-digested formulas, and what works for one person may not work for another, so it's ok if you have to try out different ones to find what works best for you. Just know that there are options, and that an elemental/pre-digested formula could really help your pancreas out!

    • @MissWeia
      @MissWeia Před 7 lety +4

      Sending hugs your way, Brittany. God bless you.

    • @karenmccreary4538
      @karenmccreary4538 Před 7 lety +4

      So glad you wrote this . Resting your throat ,Etc. is critical to it healing .This is "The Gospel Comment " !" Worth every second and every word ! Resting your throat is critical . Don't worry about the vlog, we get it . It is a ll good with God . So much love and so many prayers are coming your way I can almost hear it ! ILYLMO XXXOOO ^_^ K

    • @cl4za
      @cl4za Před 7 lety +3

      Brittany ❤❤❤

    • @ratmgr2
      @ratmgr2 Před 7 lety +1

      Brittany - so gracious of you to take so much time to help Mary. God bless you 💕🙏

  • @ThisBubblyJESUSFreak
    @ThisBubblyJESUSFreak Před 7 lety +5

    Crying out to the Lord on your behalf, Mary. My precious sister, I wish I could take all of this away. One day we won't have any of this to suffer through anymore. This is the hope we have in Jesus Christ. Love you all very much. May the Lord strengthen you, grant you His peace, and bring joy in the midst of sorrow to you both. "I can do all things through Christ which strengtheneth me."-Philippians 4:13

    • @ThisBubblyJESUSFreak
      @ThisBubblyJESUSFreak Před 7 lety

      P.S. Please take hope in the fact that all of this suffering is to the glory of God, and for your good. Romans 8:28

  • @PrincessMax360
    @PrincessMax360 Před 7 lety

    I hope you get better soon and have everything figured out as well. Stay strong!

  • @Judymontel
    @Judymontel Před 7 lety

    Praying and praying for relief and solutions for you guys. A rough spot... hugs!

  • @cnhertzog
    @cnhertzog Před 7 lety +4

    Hey Mary - Just wanted to let you know that you are far from alone. I had the exact same issue with my NJ trials many years ago (I don't have CF, but another childhood progressive/terminal genetic disorder). :/ The discomfort can be hard to explain to someone who hasn't experienced it. My guess would be that your regular coughing is jostling it and preventing it from recovering from placement. We've determined that my incessant retching caused my increased throat pain. It just stinks - the whole battle, trying to attain much-needed nutrition, the significant discomfort, the lack of better options. I would say "just hang in there," but I certainly wasn't able to heed that advice and never give advice that I can't follow. For me, after retching so violently that my NJ reversed and resulting in the other end dangling from my mouth (twice) and the bed being "fed" while we struggled to halt the pump, we went for the PEG/J-tube. Everyone's body is different though and some have little to no issues whereas others are miserable and (like me) beg to "just take it out!" (I was a bit younger at that point but I'm certain adult me wouldn't tolerate it much more.)
    I suppose, the only other piece of advise (from the ghost of NJ-tubie past) I can pass on is that they we're able to trial me with a neonatal NJ (MUCH smaller circumference). It would require removing the old and replacing with the new (potentially causing further irritation). And if it comes down to it (I don't know what your medical forecast looks like), the decision to go with semi-permanent G- and J-tubes has been a decision I would make a thousand times over. And from what I gather from your videos (I try to keep up on them but sometimes miss a few), Peter sounds like the kind of guy that wouldn't even consider the stigma attached to the tubes. He reminds me a lot of my own husband who likewise takes every new little thing in stride - going out of his way to make sure I know he'll never love me any less no matter how many bionic parts I require.
    Anyways, I guess my point is that you're most certainly NOT ALONE and I can tell you're trying your hardest to make this work. If the trial doesn't succeed, you are by no means failing - you've just determined that this particular treatment plan wasn't for you. I'll be sure to hold you in my heart with hope that a solution will be found soon and you'll be able to get home ASAP!!!
    -c

    • @cnhertzog
      @cnhertzog Před 7 lety

      PS I just got discharged from MGH (Mass General in Boston) yesterday after a 3+ week stay and introduced a good number of my medical team to your story. (I'd pass on to patients too, but like those with CF, my immune system requires virtual quarantine, leaving only for tests and then only if I'm wearing a mask...) They thought, as I do, that you are a great joy with an amazing outlook on life.
      PPS A few years back, I regularly blogged on my website and wrote extensively on my experiences with both tubes (G/j/GJ/NG/NJ/etc). I don't post much these days, but let me know if you need the reference. Most of my data and explanations can be found via google but if you're looking for personal/anecdotal information, it might help

  • @lydiatozer6795
    @lydiatozer6795 Před 7 lety +3

    Keep fighting beautiful :)

  • @rnwoodard341
    @rnwoodard341 Před 7 lety

    Oh sweet Mary! I'm praying for you! My heart goes out to you and I pray the pain will start to subside and for wisdom for you guys and your caregivers!

  • @SoldiersSweetE
    @SoldiersSweetE Před 7 lety

    Mary you are doing a great job! we are all here to support you and you are in our prayers!

  • @saragog
    @saragog Před 7 lety +9

    My favourite psalm..
    I will lift up my eyes unto the hills,
    from where does my help come?
    My help comes from the LORD,
    which made heaven and earth.
    He will not suffer your foot to be moved
    he that keep you will not slumber.
    Behold, he that keep Israel
    shall neither slumber nor sleep.
    The LORD is your keeper:
    the LORD is your shade upon your right hand.
    The sun shall not smite you by day,
    nor the moon by night.
    The LORD shall preserve you from all evil:
    he shall preserve your soul.
    The LORD shall preserve your going out and your coming in
    from this time forth, and for evermore.

  • @poppycopper1
    @poppycopper1 Před 7 lety +19

    Is it possible you have a throat infection? God bless you all xxx

    • @16050390
      @16050390 Před 7 lety +1

      maybe, but also with the nj tube it's just going to hurt every day no matter what you do probably. Sadly she will just have to get use to it

    • @trishab2147
      @trishab2147 Před 7 lety +1

      That's what I'm thinking. Strep throat or something.

  • @cheristump7089
    @cheristump7089 Před 7 lety

    Your both just a blessing to watch and listen too. Praying for you both.

  • @shawnamorse8053
    @shawnamorse8053 Před 7 lety +17

    Mary do your parents ever go see you when you stay at the hospital ?

    • @nicoleescobar1660
      @nicoleescobar1660 Před 7 lety +6

      Shawna Morse I know they live pretty far, but I know if I were in the hospital, having my mom with me would help me. 😢

    • @Olympicspirit
      @Olympicspirit Před 7 lety +17

      Was thinking the same.. Children need their parents in times of sickness, plus Peter would have a helping hand. He is doing everything and gets little rest..

    • @buildingamystery74
      @buildingamystery74 Před 7 lety +5

      Shawna Morse I think they were expecting this to be a very short stay and by the time her parents got there she'd be discharged. I'm sure they'll be visiting soon as they did at Christmas.

    • @cnhertzog
      @cnhertzog Před 7 lety +18

      Keep in mind that she's frequently in hospital for semi-routine reasons. Her parents live in another state making it difficult to be there for the whole stay each time she's in. I have no doubt, however, that if she became acutely and severely ill that they would be there immediately. (I hope I don't step on any toes with this answer as I'm just extrapolating here based on the videos I've seen, what I know about CF, and my own experience with regular stays and parents that live - quite literally - on the opposite side of the country; I'm in Boston, our parents are all in California.)

    • @TnWonderer
      @TnWonderer Před 7 lety +2

      I think Mary FaceTimes with her mom a lot...

  • @kimsouders
    @kimsouders Před 7 lety +32

    I think they accidentally gouged her throats putting that in and out and in again... 🙁

    • @16050390
      @16050390 Před 7 lety +7

      maybe, but also with the nj tube it's just going to hurt every day no matter what you do probably. Sadly she will just have to get use to it

  • @diannaL1969
    @diannaL1969 Před 7 lety +1

    You are both in my prayers. You are a trooper Mary. I admire how strong and positive Peter is for you.

  • @CelestaII
    @CelestaII Před 7 lety +2

    Just out of curiosity, when you say her blood counts dropped, what are they testing? What actually dropped?

    • @ecologist_to_be
      @ecologist_to_be Před 7 lety

      Newman Family Vlogs She often doesn't say specifics

    • @danandphiltrash6664
      @danandphiltrash6664 Před 7 lety +1

      Newman Family Vlogs i would assume that she means the blood cells - like red, white and platelets. Maybe?

  • @mst1317
    @mst1317 Před 7 lety +3

    Maybe she should have jejunem plug put in bypass all this

    • @16050390
      @16050390 Před 7 lety

      maybe, but also with the nj tube it's just going to hurt every day no matter what you do probably. Sadly she will just have to get use to it, and unless the tube feedings become more permanent they won't put any tube in that requires surgery because her body doesn't handle surgery well and the tube feedings are meant to be temporary hopefully

    • @courtney.22
      @courtney.22 Před 7 lety

      +Julie Hasselberger I hope I NEVER need a feeding tube but if I do, I'd choose a G-Tube any day.

  • @brittanysemenov9937
    @brittanysemenov9937 Před 7 lety

    You are so brave! You guys inspire me to be thankful more often and to try and be kind. Feel better soon!

  • @sandimasmama823
    @sandimasmama823 Před 7 lety

    So sorry you are having so much trouble, Mary. You both are such a blessing to so many. Praying today was better! God bless you.

  • @marleenhoncoop4188
    @marleenhoncoop4188 Před 7 lety

    A big hug from overseas, hope you feel better soon and that you find the right formula.

  • @Zerogreelynn
    @Zerogreelynn Před 7 lety +1

    You are such a wonderful human being, Mary.
    Keep on Keepin' on.
    You are an inspiration and a blessing.
    Sending you prayers and best wishes.

  • @ddaagggg
    @ddaagggg Před 7 lety

    Hope you're feeling better today Mary, lots of love!

  • @wolfsrule100
    @wolfsrule100 Před 7 lety

    Many prayers for you guys. It breaks my heart to see you in pain. Stay strong in your faith and keep marching forward! You got this!

  • @chanellejohnson7145
    @chanellejohnson7145 Před 7 lety

    Sending you light& love from bMore MD Mary.Praying healing for you.God bless you and Peter.

  • @TeriLyn7792
    @TeriLyn7792 Před 7 lety

    Your strength inspires so many. Continued prayers for answers, strength, and healing. Hugs to sweet Ollie boy. Xo

  • @deniseangonese278
    @deniseangonese278 Před 7 lety

    Mary, you're such brave young women. Sending prayers that this pain goes away and the other issues get resolved as well. ❤️❤️❤️

  • @helenrae8609
    @helenrae8609 Před 7 lety

    So sorry you're going through this, Mary. You are always in my prayers. God bless you, Peter and Oliver!

  • @fairiesandwitches2388
    @fairiesandwitches2388 Před 7 lety

    Keeping you guys in my prayers. I hope today is a bit better for you Mary.

  • @kathleenmalmstrom9758
    @kathleenmalmstrom9758 Před 7 lety

    so sorry for added complications, wishing and praying for the best tomorrow. glad you have ollie with you, looks like he can provide comfort in a way no pain meds can.

  • @benjyfiles465
    @benjyfiles465 Před 7 lety

    I'm sorry you're in so much pain, Mary. Sending love and light.

  • @kellyb228
    @kellyb228 Před 7 lety

    Bless your heart. So sorry you have to go through this.

  • @hatzhatz3234
    @hatzhatz3234 Před 7 lety

    saying a massive prayer for you Mary xx really hope the pain eases off soon and you can build your strength back up xxx

  • @carolschultz5502
    @carolschultz5502 Před 7 lety +1

    Mary I wish I could give you a big hug. I am crying after watching you in so much pain. I will say a extra long prayer for you tonight. Hi Peter you are a special young man.😔

  • @alisamejia1082
    @alisamejia1082 Před 7 lety

    What a tough situation :(
    I will definitely be praying for you. And for your medical team to have the knowledge and wisdom to help you out. 💜

  • @LoveStrongerDistance
    @LoveStrongerDistance Před 7 lety

    oh Mary. it just breaks my heart to see you going through so much! I pray things get a little smoother for you❤

  • @bluedragonfly623
    @bluedragonfly623 Před 7 lety

    I'm so sorry that you're going through this discomfort, Mary! I'm praying for you and hoping things are getting better for you today. Much love.

  • @daisy1034
    @daisy1034 Před 7 lety

    Hope you start to get a little bit better soon Mary, I can't even imagine how you are feeling right now. Many prayers are being sent your way for all of you!

  • @carriewininger2422
    @carriewininger2422 Před 7 lety

    Prayers to you both, hoping Mary feels better tomorrow.

  • @kittymervine6115
    @kittymervine6115 Před 7 lety

    God bless you both and Ollie and also all the wonderful hospital staff. For everyone that is inspired to go into medicine, or to work in anyway with hospitals...you are all a Blessing.

  • @amberhale3105
    @amberhale3105 Před 7 lety

    Sending lots of prayers for better days.

  • @licha987
    @licha987 Před 7 lety

    I hope you feel a lot better Mary my prayers are with you thank you for being a wonderful role model of strength and faith love you!

  • @taintedlove483
    @taintedlove483 Před 7 lety

    Sending positive thoughts and prayers your way. Hope you get to feeling better soon Mary.

  • @Diana-83
    @Diana-83 Před 7 lety

    Hang in there, Mary! All my love & prayers are with you ❤

  • @elizabethhomen5898
    @elizabethhomen5898 Před 7 lety

    You are such a strong woman! Praying for you speedy recovery!! 🙏🏼

  • @alexiswarren1512
    @alexiswarren1512 Před 7 lety

    Hope you get better Mary and you get out of the hospital soon!! I'll be praying for you guys

  • @lauranorwar
    @lauranorwar Před 7 lety

    You have been in my thoughts and prayers all day. I truly hope that today has been better. Love you guys!!

  • @dawnlowery75
    @dawnlowery75 Před 7 lety +1

    Prayers flyin your way!

  • @kathymckelvey1693
    @kathymckelvey1693 Před 7 lety

    Bless you Mary. May all our prayers give you strength. Peter to. Thank you for sharing. One would not understand what you go through without your videos.

  • @officeadministrator9316

    Oh Mary, my heartfelt prayers are with you and your team of doctors. I hope today has been a better day for you.

  • @stillsurviving5864
    @stillsurviving5864 Před 7 lety +1

    I'm so sorry you have to go through this. You are such an inspiration to me, someone who battles with chronic pain and illness. Sending prayers and love your way!!! Hopefully it will get better soon😊

  • @lorrainem887
    @lorrainem887 Před 7 lety

    Praying for you sweet Mary, and Peter. God bless you both

  • @CG-qg5vt
    @CG-qg5vt Před 7 lety

    My heart goes out to you Mary, you will continue to be in my prayers. Stay strong and may God bless you and Peter. Wish I could be there by your side to support and help you guys.

  • @Karenm1969
    @Karenm1969 Před 7 lety

    So sorry Mary, that you are going through this. You take care !!!😊😊😊