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!
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
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
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!!!!
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
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.
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.
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. 🌼🌹🌸🌼🌹🌸🌼🌹🌸🌼🌹🌸
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. 💖💕
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 💕😘💕
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.
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 ❤💜💛
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.
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
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.
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! 💗
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!
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" 🙏🏻
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.
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
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 ❤️❤️
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
My heart is breaking for you sweet Mary! Praying for things to get better quickly for you. You, Peter and Ollie help me get thru so many very dark, bleak and painful days. Praying is the only thing I can do to try and return the favor. Much love and prayers to you!
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
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 💖
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
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
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.
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..
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.
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.)
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
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 !!!
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.
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!!!
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
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.
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.
💗(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)👇👇
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!
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
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😊
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.
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
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.
Praying Mary for healing of your throat, your body to accept the new formula and your blood counts to come up. Your tears are counted as precious. Love you Mary & Peter.
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.
Oh Mary, I can't say I know what your going through but I can only imagine. I am so sorry you have to go through this. You are such a strong young woman and so brave.
I am so so sorry that things are so bad right now. Lifting both of you up in prayer and your medical team as well. Mary, you amaze me. Even when you are in so much pain you can still put a smile on your face and find at least one positive thing in each and every day. Sending you gentle, germ free hugs.
Mary, you and Peter are a true example of what love is all about. You give a new meaning to "through sickness and health". I would feel blessed to have friends like you. I send prayers that you get past this episode💓
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!
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.
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!
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
SAME
purr bugaloo I am sending all the love possible!!!
I'm worried also
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.
Feel so bad for Mary it seems she never gets a break,, Continue prayers for her!
Amen to that... feel so bad for her.. Sure breaks my heart to see her in pain like this.. sigh. :(
Dawn's New Light .
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
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!!!!
Good for you Anna Young !!! That's a big accomplishment and you should be VERY proud of yourself !!! Congratulations
Congratulations! That is so awesome! 🎉
Griffin Black yay!!! 🎉💜
Griffin Black Yay!
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
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.
Same. Hugs and prayers
Christy In The Carolina's nfjffjgjhjjghjhjghghfjgjhjgjgjkkfk
Chjikiuiwjiskoopqpoo quits on
Keep fighting, love. So many of us have you in our prayers. ❤️
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.
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.
So sorry Mary is in such pain. Praying much, for both of you.
You're so inspiring! Hope you start feeling better soon! Keep fighting! You're amazing
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. 🌼🌹🌸🌼🌹🌸🌼🌹🌸🌼🌹🌸
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. 💖💕
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 💕😘💕
Same here with Fibro and blessed extras. Weird how we all found her and have the same thing
I have fibro, chronic fatigue, Epstein Barr, and pernicious anemia. I'm glad to have found Mary. She gives me strength.
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.
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 ❤💜💛
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.
You are adorable, stay strong my dear. You are an inspiration.
Oh, I do hope you are FEELING better today, LOVE AND LIGHT GOING YOUR WAY.
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! ❤️
Oh Mary ! You are such a warrior.. I am praying for comfort and that your body can absorb the new formula❤️
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.
What an interesting tip!
Warm honey is always soothing to my sore throats.
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
giggles and hugs I think this may be more for stomach upsets? it works for travel sickness for me.
Dark chocolate
Oh Mary, my heartfelt prayers are with you and your team of doctors. I hope today has been a better day for you.
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.
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
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.
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! 💗
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!
Brittany and her immunity is probably down a bit taking her longer to heal
You are both in my prayers. You are a trooper Mary. I admire how strong and positive Peter is for you.
We love you Mary. Keep fighting. Love to the whole family.xo
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!
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" 🙏🏻
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.
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
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.
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 ❤️❤️
Your strength inspires so many. Continued prayers for answers, strength, and healing. Hugs to sweet Ollie boy. Xo
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!
hearsthewater I had considered that as well.
hearsthewater I wondered the same!
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
hearsthewater Good point.
hearsthewater that's a good point
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.
Praying for you guys ❤ hang in there!!
Mary and Peter you're both truly a gift from God. I admire your bravery and I hope that today's a better day. 💖☺
Is it possible you have a throat infection? God bless you all xxx
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
That's what I'm thinking. Strep throat or something.
My heart is breaking for you sweet Mary! Praying for things to get better quickly for you. You, Peter and Ollie help me get thru so many very dark, bleak and painful days. Praying is the only thing I can do to try and return the favor. Much love and prayers to you!
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
Fly when you think you can't walk. Mary you are strong. Keep it up! Praying for you all!
we love you Mary olie your sweet hubby
Prayers for both of you! And how lovely and supportive is Ollie?
Hoping Mary gets better soon. Being in pain is not fun and having stomach problems is not fun either
So sorry you're going through this, Mary. You are always in my prayers. God bless you, Peter and Oliver!
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 .
I am so glad you have Peter. I'm praying for you!
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 💖
Wow, a playlist of music you find inspirational would be so AMAZING!
I'm sorry you're struggling just now, Mandie. *hugs*
You are so brave! You guys inspire me to be thankful more often and to try and be kind. Feel better soon!
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
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
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.
Mary do your parents ever go see you when you stay at the hospital ?
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. 😢
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..
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.
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.)
I think Mary FaceTimes with her mom a lot...
Over a thousand people wishing you well, and we want to add our voices. God bless you both.
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
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
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 !!!
Oh, she breaks our hearts! Praying they find out what is going on and she starts feeling better.
My momma heart is breaking for you, but we have a God who is a great physician. He is hearing your name Mary.
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.
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!!!
Katie Partsch They've already scanned her in previous vlog
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
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.
Absolutely true. People throw up nj tubes, so I'm sure they can cough enough to wriggle them
We are praying for you Mary and Peter. I hope things get better tomorrow.
Just out of curiosity, when you say her blood counts dropped, what are they testing? What actually dropped?
Newman Family Vlogs She often doesn't say specifics
Newman Family Vlogs i would assume that she means the blood cells - like red, white and platelets. Maybe?
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.
💗(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)👇👇
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!
Sending hugs your way, Brittany. God bless you.
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
Brittany ❤❤❤
Brittany - so gracious of you to take so much time to help Mary. God bless you 💕🙏
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😊
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.
That's mine too😊
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
I think they accidentally gouged her throats putting that in and out and in again... 🙁
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
You are such a strong woman! Praying for you speedy recovery!! 🙏🏼
Maybe she should have jejunem plug put in bypass all this
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
+Julie Hasselberger I hope I NEVER need a feeding tube but if I do, I'd choose a G-Tube any day.
The way you keep positive is such an inspiration for all of us! Keep fighting Mary, we're all fighting together with you!
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.
prayers for your peace in the midst of storms. Prayers for the pain to subside. Prayers for good things.....Prayers.
Sending prayers for healing and strength to you Mary. Hoping that you have easier and better days ahead 💐
Prayers flyin your way!
Praying Mary for healing of your throat, your body to accept the new formula and your blood counts to come up. Your tears are counted as precious. Love you Mary & Peter.
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.
Oh Mary, I can't say I know what your going through but I can only imagine. I am so sorry you have to go through this. You are such a strong young woman and so brave.
Mary you are doing a great job! we are all here to support you and you are in our prayers!
Sweet Mary, my heart is breaking for you. God bless you!
It takes a village, and there are a lot of us sending you love and admiration!
Ollie looks like such a comfort. Laying on her and holding hands! Love helps so much. Dogs are angels, especially Oliver 👼 💖
Prayers & Hugs! Hope you feel better tomorrow!
I hope you had a better day today. Praying for you!
I'm sorry you're in so much pain, Mary. Sending love and light.
Mary you are the strongest! Sending all my love & prayers to you!
I am so so sorry that things are so bad right now. Lifting both of you up in prayer and your medical team as well. Mary, you amaze me. Even when you are in so much pain you can still put a smile on your face and find at least one positive thing in each and every day. Sending you gentle, germ free hugs.
Praying for you, dear Mary! And you too, Peter!
Prayers for relief from the pain! As always you are graceful rockstar through this journey!
Oh Mary! My heart is breaking for you😢. Sending hugs and prayers to both of you❤️🙏! Hoping for a good turn around tomorrow!!!!
Oh Mary my heart aches for you! Praying for better days ahead as your body get used to its new normal! Stay strong❤️😢
Mary, you are so special. Hope and pray your throat gets better.
Mary, you and Peter are a true example of what love is all about. You give a new meaning to "through sickness and health". I would feel blessed to have friends like you. I send prayers that you get past this episode💓
Praying, praying for Mary to feel better soon. God Bless.
Praying for relief.
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.
I love you Mary! Praying for strength in your struggles
My heart breaks for you both. 😢 What a blessing it is to have Ollie there to comfort Mary. 🐕
I will be praying for you! Hope you feel better tomorrow!
We're with you, Mary! Stay strong. Peter and Ollie, you're doing great supporting her. Good luck, y'all!
This is such a difficult journey! I am praying for both of you daily!!!
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!
I am sending so much love and many warm hugs! Thinking of you!!
saying a massive prayer for you Mary xx really hope the pain eases off soon and you can build your strength back up xxx
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.
Praying for you Mary! You are so strong and are an amazing inspiration!