😢 ROUGH DAY IN THE HOSPITAL 🏥 (1.23.17)

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  • Опубліковано 23 січ 2017
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КОМЕНТАРІ • 1,1 тис.

  • @purrbugaloo
    @purrbugaloo 7 років тому +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 7 років тому +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 7 років тому

      SAME

    • @elliem.8537
      @elliem.8537 7 років тому +2

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

    • @arlyandjay
      @arlyandjay 7 років тому +2

      I'm worried also

    • @lildeegurrl
      @lildeegurrl 7 років тому +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 7 років тому +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 7 років тому +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 7 років тому

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

    • @CelestaII
      @CelestaII 7 років тому +1

      Congratulations! That is so awesome! 🎉

    • @cl4za
      @cl4za 7 років тому +3

      Griffin Black yay!!! 🎉💜

    • @natalieh5843
      @natalieh5843 7 років тому +3

      Griffin Black Yay!

  • @mindbodyandsoul.myjourneyt9797
    @mindbodyandsoul.myjourneyt9797 7 років тому +96

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

    • @WyntersFrost
      @WyntersFrost 7 років тому +19

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

    • @virginiamangelli8599
      @virginiamangelli8599 7 років тому

      Dawn's New Light .

  • @christyinthecarolinas
    @christyinthecarolinas 7 років тому +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 7 років тому +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 7 років тому +8

      Same. Hugs and prayers

    • @tashiamavretic2262
      @tashiamavretic2262 6 років тому

      Christy In The Carolina's nfjffjgjhjjghjhjghghfjgjhjgjgjkkfk

    • @brooketodd2822
      @brooketodd2822 5 років тому

      Chjikiuiwjiskoopqpoo quits on

  • @judyriechman541
    @judyriechman541 7 років тому +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 7 років тому +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 7 років тому +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 7 років тому +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 7 років тому +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 7 років тому +3

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

  • @KristinaMarie96
    @KristinaMarie96 7 років тому +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.

  • @sneepsnorp1404
    @sneepsnorp1404 7 років тому +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.

  • @AwakeLazarus
    @AwakeLazarus 7 років тому +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 7 років тому +6

      What an interesting tip!

    • @suzieannie98
      @suzieannie98 7 років тому +6

      Warm honey is always soothing to my sore throats.

    • @16050390
      @16050390 7 років тому +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 7 років тому +1

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

    • @madidewitt6224
      @madidewitt6224 7 років тому +3

      Dark chocolate

  • @JodiBeans411
    @JodiBeans411 7 років тому +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 7 років тому +26

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

  • @PlatinumFairy
    @PlatinumFairy 7 років тому +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 7 років тому +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 7 років тому +4

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

    • @armywife4life78
      @armywife4life78 7 років тому +2

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

    • @MountainGirl7771
      @MountainGirl7771 7 років тому +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 7 років тому +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 7 років тому +12

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

  • @hearsthewater
    @hearsthewater 7 років тому +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 7 років тому +2

      hearsthewater I had considered that as well.

    • @quietlyobserving6531
      @quietlyobserving6531 7 років тому +3

      hearsthewater I wondered the same!

    • @SharpLife4
      @SharpLife4 7 років тому +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 7 років тому +1

      hearsthewater Good point.

    • @lindseyn.7284
      @lindseyn.7284 7 років тому +1

      hearsthewater that's a good point

  • @ashlynbeardd
    @ashlynbeardd 7 років тому +10

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

  • @LittleBohoChick
    @LittleBohoChick 7 років тому +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" 🙏🏻

  • @faithdavis7258
    @faithdavis7258 7 років тому +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 .

  • @MaFFilon
    @MaFFilon 7 років тому +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 7 років тому +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 ❤️❤️

  • @meganstiles8325
    @meganstiles8325 3 роки тому

    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.

  • @cheryl_Anne_02
    @cheryl_Anne_02 7 років тому +1

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

  • @Thenebraskahanger
    @Thenebraskahanger 7 років тому +5

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

  • @davedalane6505
    @davedalane6505 7 років тому +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

  • @sammihelmer9626
    @sammihelmer9626 7 років тому +1

    Fly when you think you can't walk. Mary you are strong. Keep it up! Praying for you all!

  • @tracylily7235
    @tracylily7235 7 років тому +1

    I had a bad sore throats after a endoscopy and cloraseptic lozenges really helped. I pray for you sweet Mary and Peter as well. ❤️🐶

  • @josiem4562
    @josiem4562 7 років тому +3

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

  • @little2friendly
    @little2friendly 7 років тому +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 7 років тому

      Katie Partsch They've already scanned her in previous vlog

    • @ecologist_to_be
      @ecologist_to_be 7 років тому +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 7 років тому +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 7 років тому +2

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

  • @annahasty7191
    @annahasty7191 7 років тому +2

    Mary and Peter you're both truly a gift from God. I admire your bravery and I hope that today's a better day. 💖☺

  • @carolschultz5502
    @carolschultz5502 7 років тому +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.😔

  • @lovin.my2.yorkies823
    @lovin.my2.yorkies823 7 років тому +2

    Praying for you guys ❤ hang in there!!

  • @FailuresandFulfillment
    @FailuresandFulfillment 7 років тому +5

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

  • @erinburrington4435
    @erinburrington4435 7 років тому

    Prayers & Hugs! Hope you feel better tomorrow!

  • @christi3411
    @christi3411 7 років тому +2

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

  • @MandieZangora
    @MandieZangora 7 років тому +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 7 років тому +7

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

  • @amytaylor-kramer4019
    @amytaylor-kramer4019 7 років тому +3

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

  • @kaijagermain25
    @kaijagermain25 7 років тому

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

  • @whitneyfranklin258
    @whitneyfranklin258 7 років тому

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

  • @ivyedan7183
    @ivyedan7183 7 років тому +6

    we love you Mary olie your sweet hubby

  • @unknownentity7964
    @unknownentity7964 7 років тому +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

  • @surur4747
    @surur4747 7 років тому +2

    Mary! You are doing so much to take care of yourself and it is so commendable! There are many patients who get frustrated and fed up and stop their regime of care, but not you! Dont forget u have over 100000 people who are so proud of you! U will get through this day! I feel lucky to have come across your videos!

  • @learningaswegocitygonecoun6805
    @learningaswegocitygonecoun6805 7 років тому

    Keeping you in my prayers. Gentle hugs!!!

  • @kathywaddington1978
    @kathywaddington1978 7 років тому +9

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

  • @kaylagibson2025
    @kaylagibson2025 7 років тому +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 !!!

  • @zoey7809
    @zoey7809 7 років тому

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

  • @nicpeti3383
    @nicpeti3383 7 років тому

    Stay strong! Keeping both of you in my prayers!

  • @BhappyD
    @BhappyD 7 років тому +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 7 років тому +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 7 років тому +4

      Sending hugs your way, Brittany. God bless you.

    • @karenmccreary4538
      @karenmccreary4538 7 років тому +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 7 років тому +3

      Brittany ❤❤❤

    • @ratmgr2
      @ratmgr2 7 років тому +1

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

  • @ThisBubblyJESUSFreak
    @ThisBubblyJESUSFreak 7 років тому +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 7 років тому

      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

  • @caylajo5907
    @caylajo5907 7 років тому

    I love you Mary! Praying for strength in your struggles

  • @dawnlowery75
    @dawnlowery75 7 років тому +1

    Prayers flyin your way!

  • @cnhertzog
    @cnhertzog 7 років тому +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 7 років тому

      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

  • @poppycopper1
    @poppycopper1 7 років тому +19

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

    • @16050390
      @16050390 7 років тому +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 7 років тому +1

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

  • @lottiebastille3162
    @lottiebastille3162 7 років тому

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

  • @kristigriffith4471
    @kristigriffith4471 7 років тому

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

  • @saragog
    @saragog 7 років тому +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.

  • @shawnamorse8053
    @shawnamorse8053 7 років тому +17

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

    • @nicoleescobar1660
      @nicoleescobar1660 7 років тому +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 7 років тому +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 7 років тому +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 7 років тому +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 7 років тому +2

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

  • @kellyb228
    @kellyb228 7 років тому

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

  • @ShelKim1991
    @ShelKim1991 7 років тому

    My heart breaks for you both. 😢 What a blessing it is to have Ollie there to comfort Mary. 🐕

  • @kimsouders
    @kimsouders 7 років тому +32

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

    • @16050390
      @16050390 7 років тому +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

  • @lydiatozer6795
    @lydiatozer6795 7 років тому +3

    Keep fighting beautiful :)

  • @benjyfiles465
    @benjyfiles465 7 років тому

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

  • @amberhale3105
    @amberhale3105 7 років тому

    Sending lots of prayers for better days.

  • @CelestaII
    @CelestaII 7 років тому +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 7 років тому

      Newman Family Vlogs She often doesn't say specifics

    • @danandphiltrash6664
      @danandphiltrash6664 7 років тому +1

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

  • @mst1317
    @mst1317 7 років тому +3

    Maybe she should have jejunem plug put in bypass all this

    • @16050390
      @16050390 7 років тому

      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 7 років тому

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

  • @ddaagggg
    @ddaagggg 7 років тому

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

  • @annitaquiggle4994
    @annitaquiggle4994 7 років тому

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

  • @puppygaga1508
    @puppygaga1508 7 років тому

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

  • @alinalacubana.5450
    @alinalacubana.5450 7 років тому +2

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

  • @diannaL1969
    @diannaL1969 7 років тому +1

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

  • @wolfsrule100
    @wolfsrule100 7 років тому

    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!

  • @elizabethhomen5898
    @elizabethhomen5898 7 років тому

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

  • @LemonCrush1078
    @LemonCrush1078 7 років тому

    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.

  • @mandisutter8598
    @mandisutter8598 7 років тому

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

  • @JKCJFM
    @JKCJFM 7 років тому

    We are praying for you Mary and Peter. I hope things get better tomorrow.

  • @KristiBranstetter
    @KristiBranstetter 7 років тому

    Prayers and Hugs

  • @nancyfenton7463
    @nancyfenton7463 7 років тому +1

    prayers for your peace in the midst of storms. Prayers for the pain to subside. Prayers for good things.....Prayers.

  • @carriewininger2422
    @carriewininger2422 7 років тому

    Prayers to you both, hoping Mary feels better tomorrow.

  • @officeadministrator9316
    @officeadministrator9316 7 років тому

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

  • @helenrae8609
    @helenrae8609 7 років тому

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

  • @thepooderdiaries
    @thepooderdiaries 7 років тому +1

    I lost it crying when she did. I pray for you all every single day

  • @mark-nt5pg
    @mark-nt5pg 7 років тому +1

    So hard to watch you go through this difficult time but also glad so we can pray for you. Peace be with you Sweet Lamb. Your presence is so big and needed on this earth.

  • @janjiguere638
    @janjiguere638 7 років тому +1

    Praying Mary, Peter and Oliver....Mary your strength is amazing. I am so sorry you're in so much pain...God bless you, Peter and Oliver

  • @brittanysemenov9937
    @brittanysemenov9937 7 років тому

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

  • @Diana-83
    @Diana-83 7 років тому

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

  • @aemummie1
    @aemummie1 7 років тому +1

    Oh Mary my heart aches for you! Praying for better days ahead as your body get used to its new normal! Stay strong❤️😢

  • @SoldiersSweetE
    @SoldiersSweetE 7 років тому

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

  • @sandimasmama823
    @sandimasmama823 7 років тому

    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.

  • @Dacuteone08
    @Dacuteone08 6 років тому

    I am so glad you have Peter. I'm praying for you!

  • @bluedragonfly623
    @bluedragonfly623 7 років тому

    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.

  • @contrapasso
    @contrapasso 7 років тому +1

    I thought of two images last week, and I want to share them with you. The first is Peter standing, catching Mary in his arms mid-faint. Peter's leaning over Mary slightly, nose pressed to her forehead in love. Oliver sits tall under Mary, his nose supporting her back. This is what our eyes see, a sick woman and two good souls who won't let her fall. But then, the same image beside the first, except Peter and Ollie have a glow to them, and angel wings that stretch out behind them. Mary has wings, too, enormous wings, and even while unconscious, they wrap protectively around her family. She's the brightest angel in the room. Physical and metaphysical, both true. Fly when you think you can't walk

  • @PrincessMax360
    @PrincessMax360 7 років тому

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

  • @cheristump7089
    @cheristump7089 7 років тому

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

  • @marleenhoncoop4188
    @marleenhoncoop4188 7 років тому

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

  • @erinuber2881
    @erinuber2881 7 років тому +1

    Sorry it's so tough, Mary...hope the pain starts to ease, and the new formula works better. Praying for all three of you. Wishing you peace, comfort, and strength.

  • @kathleenmalmstrom9758
    @kathleenmalmstrom9758 7 років тому

    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.

  • @krispybacon117
    @krispybacon117 7 років тому

    You both are in my prayers Frey Life. I can't imagine the amount of love and strength it would take to make it through this disease together. God be with you both.

  • @Judymontel
    @Judymontel 7 років тому

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

  • @fairiesandwitches2388
    @fairiesandwitches2388 7 років тому

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

  • @AnneloesF
    @AnneloesF 7 років тому

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

  • @lorrainem887
    @lorrainem887 7 років тому

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

  • @stillsurviving5864
    @stillsurviving5864 7 років тому +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😊

  • @sarahgrace804
    @sarahgrace804 7 років тому

    Stay strong Mary and Peter. You guys are always in my prayers and thoughts