#feedingtubeproblems

[swimmiey]

A little over a week ago my NJ started to leak bile and stomach acid. Also everytime I ate or drank something it leaked out and I started to threw up formula, so I knew it had migrated from my jejunum to my stomach and needed to be replaced. It happened on Saturday night so we decided to hold my feeds for a day and called my nephrologist on Monday. They had an opening on Tuesday, so I wasn’t to long without my feeds. It needed to be replaced on the endoscopy ward with a gastroscopy. I was given versed, but was still wide awake and noticed everything that happened during the endoscopy. They tried placing it through my nose instead of my mouth like last time, but the scoop was to big so it did hurt like hell.. but I’m glad they were able to place it through my nose. Hopefully this tube stays in place for a while, because I’m really disliking the placements. My blood pressure was really low during the procedure and after (70/35) the alarm went off constantly, so they almost made me stay the night.. But luckily it came up just enough to be allowed to go home. -------------------------------------- #njtube #ifeellikegivingup #feedingtube #feedingtubeproblems #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #totiredtofunction #chronichope #chronicheadache #chronicillness #chronicpain #chronicfatigue #electrolyteimbalance #invisibleillness #intracranialhypertension #sondevoeding #fanconisyndrome #butyoudontlooksick #headachefromhell #versed #hospitallife #hypotension #endoscopy #gastroscopy #endoscopie #gastroscopie #ineedacure #chronischziek #kidneydisease (bij Isala)

[thecaregiverspace]

📷: @tubefedandfabulous Number. One. Mom & Caregiver🏆 and not behind the camera for once! @willow_woman is currently sleeping in the lazboy next to my bed, as she does every night, while I raid her camera roll and try to hold off waking her. • She can't sleep in my bed with me anymore because the angle of the head is so high. I aspirate now that I'm forced to attempt (and fail at) oral intake every day. • I do this to myself and say "forced" because the general and all consuming "they" refuse to 1. Feed me through my PICC line 2. Treat my Mayo-diagnosed illness and follow Mayo's treatment plan. • So my mom's life currently consists of being my mom, my Sherpa, my physician, my nurse, my maid, my communication point since I refuse to find my phone, and my cruise director. •She cleans out vomit bowls and vent bags multiple times every day. She crushes and preps and draws up my meds since I can't do it anymore. She washes my hair and puts the giant shower glove on my PICC line arm, then helps bathe and dry my body (we only do this 1-2x a week because it's too hard for both of us). • At night she sleeps lightly and is repeatedly scared awake by the sounds of me choking or vomiting or groaning- she has to make sure I'm a awake and spitting, because to get me to sleep, they have to sedate me hardcore at night. • At least I get cannabis, and a malnourished brain that forgets easily. My mom doesn't have those luxuries. • She watches her kid struggle and starve and worries that if she is so tired that she doesn't wake to the sounds of aspiration, I'll die or if she wakes up too late we'll battle aspiration pneumonia again. • Yet, she will smile at me sweetly when she wakes up, she'll remind me of the appointments we have scheduled today, and she'll ask me "what do you need before we can get you ready?" • We are really good at coping. But caregiver burnout is real. If my mom is all those things for me, who is holding space for her? ‼️ Please, send all the vibes to my mom. She needs the support ❤️ #caregiver #caregiverburnout #thebestpersonintheworld #thankyou #gratitude #somuchlove #feedingtubeproblems #centralsensitization #feedme #tubiemomma #facesofcare http://ift.tt/2nlm08p