6,768 Posts

bstant86 Poor lil sick-y. I dont have the heart to get the knots outta her hair bc she has those baby body aches. Nothing sadder than your child hurting.

#ChloeyBelle #Microcephaly #specialneeds #cerebralpalsy #ID #babyflu #theflu #anotherkindamonster #tubiebaby #gtube #toddler
3h

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  •   journeyappstore3 Hello, you Definitely should check out my Page. It is Very Inspiring. It is a Social Media App for People with Physical Disability, Mental Illness, Learning Disability, & Many More. I am trying to Spread the Word. Please Follow for More Info :) 16h

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jennhope34 One year ago - waiting on my walking, I mean discharge papers. This was after my port placement (the one that never worked) and the g to gj tube conversion. GI didn't get a chance to clip or stitch the j part to my small bowel because I kept desatting in the OR. THE anesthesiologist told GI to "move it along" because even with an LMA device in he was still having trouble maintaining a good airway. They did an x-ray the next day and the j part had already flipped up into my stomach.
A few weeks later GI pulled the tube back down into my small bowel and secured it with two clips. I could never get my feed rate above 3-5ml/hr. During another operation a few weeks later when Vascular removed the defective port and placed a dual lumen Hickman, GI then came in and turned it back into a straight g tube for venting. I was on TPN through this whole process. Now I'm NPO & 100% dependent. November 23, 2013.
Because of my weak respiratory system, history of collapsed lungs and ventricular tachycardia, and various mito related complicationsI am automatically admitted for at least one night after every procedure.
They abruptly stopped my TPN when it finished at around 4:00 the day of surgery, so my labs were terrible the next morning. I needed something like six bags of potassium and four of magnesium. I was so glad they didn't pull the PICC line in surgery.
#centralline #surgery #port #piccline #gtube #gjtube #gjconversion #tpndependent #hospital #chronicillness #chronicpain #mitochondrialdisease #mito #dysautonomia #ehlersdanlossyndrome #ivfluids #terminalillness #awareness #pots #adayinthelife #gastroparesis #dtp #digestivetractparalysis
1d
  •   xaemama I had my TPN line placed on November 23 as well. I have been off since May. I will keep you in my prayers. Praying your labs stay well and your liver stays healthy! 19h

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msmaddyhart It's nights like these where I mourn the death of my old life. Not out of self-pity or woe, but out of pure regret. It was a rough night of realization that I am not a normal teen nor will I even know what it's like to be one.
I had no idea that the day this photo was taken, would be my last healthy day. The last day that I needn't worry about keeping myself safe from the deadly outcomes of an infection, changing my feeding tube dressings, or taking my crucial meds on time. I regret not knowing. Not knowing that this was the last day that I could live without knowing that I'm dying. Not knowing how precious my life was, and not knowing what was coming. I regret missing school just to sleep in late, or to go shopping. I regret not being more gratuitous of the life that I had and the opportunities handed to me.
If I could tell young little Maddy anything at all, it would be to not take a single moment for granted. To live the best life you can before you actually have to fight for it. Before you have to fight each and every day to stay alive
I am a fighter. I WILL kick ass. I WILL NOT die without a fight. So FUCK YOU, Behcet's.
1d
  •   allie12323 You will kick ass and you will be able to cherish everyday when you are healthier, and when you do fight it, and win it! Love you Maddy, stay strong girl @msmaddyhart 1d
  •   kelsie_2015 I love you so much Maddy! And this makes me sad everyday that one of my old good friends is fighting for her life! You are strong, beautiful,smart, outgoing etc. and it's a damn shame a girl like you has to fight for her life! I miss you so much and we need to hang out soon!! Stay strong Maddy you can do it! Others believe in you but it's you who needs to believe in yourself most! 1d
  •   gfkb_ 1d
  •   isa.schramel you are such an inspiration. I wish only the best for you and I will be here throughout your entire fight. 1d
  •   sophiecarbs You are truly inspirational to me Maddy 1d
  •   faithlikefee You're amazing! 1d
  •   chikaa18 This literally gave me goosebumps ️ you're strong and you'll fight this battle you're going through! 1d
  •   samsuzsmoky You looked wonderful today, keep going strong!!!😇@msmaddyhart 20h

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raremom When your #tubie asks for a happy meal at midnight after an ER run, you get it!
#toughasnails
#stucktwicenotears
#VEPTR
#Gtube
#FTT
2d

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jennhope34 Zebra cake for a late birthday celebration! I was even able to swallow a couple of bites! Wish I could eat more, but I thoroughly enjoyed it. #zebra #zebracake #birthday #gastroparesis #dtp #chronicillness #gtube 2y
  •   pots_togetherwestand Hey I have told my mom about you and how you live in Toledo and stuff and I have to ask you if you have ever had abdominal pain for 4 days or more? 2y
  •   jennhope34 @pots_togetherwestand I always have some pain, but I've never had intense pain for that long. 2y
  •   pots_togetherwestand Ok thanks. I went to my family doctor he can't do much but it's gone know. Grubb said I wasn't worth seeing. 2y

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Normal HopeMade Designs
hopemadedesigns Can you guess what this is? I'm working on perfecting my prototype for g-tube (feeding tube) pads! When it's ironed out it will also have a plastic Kam snap on it. A friend asked if I could make these as she uses them for her daughter. This is just another way I can be creative & help make someone else's life a little easier or a little less painful. There's many ways to help make a difference :) #hopemadedesigns 3mon

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jennhope34 One year ago. I had just gotten up to my room from the recovery room after my port placement and g to gj conversion. Luckily they left the PICC line in during surgery because the port never worked. We figured out that my entire digestive tract is paralyzed so the g to gj was not helpful. Now I have a straight g tube for venting. The faulty port was removed several weeks later and replaced with a dual lumen Hickman. So much has changed and happened this year.
#port #piccline #hickman #centralline #gtube #gjtube #gjconversion #chronicillness #chronicallyill #invisibleillness #mitochondrialdisease #mito #dysautonomia #pots #ehlersdanlossyndrome #awareness #surgery #fighton #gastroparesis #dtp #digestivetractparalysis #smallboweldysmotility #adayinthelife #chronicpain
2d
  •   terratalking Wow what a crazy ordeal that sounds like in just a short time! 2d

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tonyadoughty I'm sure Chris Hemsworth is loved, being the newest "Sexiest man alive" but I'm really leaving this #secretmessage for someone to find in the General Surgery waiting room while we wait for one of DJs follow-up appts.

#vscocam #secretmessages #Wenatchee #art #silverlining #watercolor #sharpie #micron #lettering #typography #chron's #chrons #ileostomy #gtube #gastrostomy #autoimmune
2d

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  •   lois21here Superb! Check out my bio ;) 2d
  •   orchidgoth Mini you :) and that hairstyle is beyond cute :)) 23h
  •   prslyyy @orchidgoth thank you! 19h
  •   orchidgoth @prslyyy she literally looks like a princess from a cartoon :) 19h
  •   blaszkat She is a mini you! :) so stinkin cute! Love her hair like that! Reminds me of you :) 17h

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cassielizabeth Breakfast and cartoons with big brother. #babybrother #gtube #enteralite 2d

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laurenislov3ly She's finally breathing and sleeping smoothly! #SickBabies #Premies #Trach #Ventilator #Oxygen #TPN #GTube 3d

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house_full_of_girls How we accessorize at our house :) #trisomy13 #gtube 3d

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mistasilva Love this fighter! Feeding time! Those lashes doe!! #jacksonsjourney #gtube #babybelly #curesma #sma 3d

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