Picbear logo Browse Instagram content with Picbear

@fromnursetopatient

Caitlin Crabb

fromnursetopatient

โž–Registered Nurse ๐Ÿฅ๐Ÿ’Š๐Ÿ’‰ โž–Relapsing Polychondritis Awareness ๐Ÿ—ฃ โž–DCP Alumni, Disney Pin Trading ๐Ÿ“ธ๐ŸŽฅ VLOG ๐ŸŽฌ๐Ÿ“บ

  • 1K Total Likes
  • 269 Tot. Comments
I cut off my face but hey! I made it on the swings to ride with my little love! So happy I could get on and do something “normal” with my niece. She has been so understanding through everything lately. ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ #caycayandbudadventures #buschgardens #swings #niece #love #happy
Twinning with my Quinn ๐Ÿ˜ dinner with the fam bam at Tijuana Flats โ˜บ๏ธ
New video up with my girl! I’m home from the hospital and I have my bud, Sophia Grace, back and ready to make a video ๐Ÿ’• some Disney extras after the update ๐Ÿ˜ Link in my bio. As always, thanks for watching! . . . #caycayandbud #youtube #vlog #vlogger #relapsingpolychondritis #relapsingpolychondritisawareness #gastroparesis #feedingtube #longhospitalstay #hospitaltohospital #homehealth #sophiagrace #disney #descendants #barbiedolls
Happy Mother’s Day to my sisters and it’s both of my besties first Mother’s Day ๐Ÿ˜Š๐Ÿ˜ I can’t wait to see your baby boy and girl! Y’all are gonna be amazing mommies! ๐Ÿ’•
Happy Mother’s Day to the best mom a chronically ill adult child could ask for. Every appointment, infusion, and hospitalization states away and she’s there. I love you and am so thankful for everything you do for me ๐Ÿ’•
Disney College Program graduation ๐Ÿ‘ฉ‍๐ŸŽ“ ๐Ÿญ ๐Ÿ‘ธ๐Ÿผ and lifelong friendships ๐Ÿ˜๐Ÿ˜๐Ÿ˜ tag yourself! #lifelongfriends #disney #disneyworld #disneycollegeprogram #graduation #showyourears #stillhavemycap #takemeback #blx #backlotcrew
The few pics I took for my birthday party... it was sooo good seeing friends and family! I have missed them sooo much! I even was able to eat a taco and small slice of ice cream cake ๐Ÿ˜ happy cinco de mayo! I hope everyone had a good day and be safe getting home after the margaritas ๐Ÿ˜‰๐Ÿน๐Ÿ’•
And just like that I AM DISCHARGED! 69 days (10 weeks) in the hospital but who’s counting ๐Ÿ˜… I was unable to tolerate another tube feed. I thought going through the PEG-J procedure was going to be the hardest part. Sheeesh. The dietician was persistent on me being on the tube feed that I was initially on with my nasal-duodenal tube. I had a random airway event after starting it. I did not feel comfortable “trying it” again. I asked my primary team if I could trial tube feeds in an outpatient setting. They agreed as it may help my autoimmune condition simmer down now that they have made me flare to all HELL. It’s not like they ever understood my condition, which is why I had 3 rapid responses. Even after my airway closed and I went into a persistent arrhythmia, they still did not understand. It is beyond me on how John’s Hopkins is known as such a prestigious hospital. I have no problem in saying this. I saw different specialties during my admission. There was nothing special provided that could not have been done at one of my local hospitals. Not only this, but I now have a hospital-acquired infection. The doctors acted like this was to be expected. I guess in a sense I should expect it. I should expect it from a facility that continuously put my safety at risk. I am not well, but I will be much safer at home than, sadly, I was at the hospital. Thank you to all who have given me such kind words, thoughts, and prayers during this rocky road. I am so, so grateful ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ
I’m officially at the goal rate for my tube feeds! I feel like I just want to crawl out of my skin. I am so itchy, my face is broken out and puffy, and my throat is a little tight and irritated. I can breathe and I’m not having active wheezing. My oxygen is hanging out on the lower side. The key is to remain calm so I do not trigger my body to further react in any way. I think it will be better on my body to keep it going steady at this level so I can get through this and go home.. I am so uncomfortable. Any ideas for distraction? Or what helps your reactions/itching?
I’m just feeling really, really defeated. Last night, I tried to give up... but that’s the thing I try to give up but I’m still stuck in my situation. So, I can’t really give up, if that makes sense? No matter what I do, I will be here, in this hospital, going through the same battle no matter if I “keep fighting” or “throw in the towel.” I realized I had the shitty nurse who didn’t listen to me and kept doing what the computer said, instead of questioning the order or even listening to me on what was discussed with the doctors. I asked never to have her again and I didn’t until last night. So I was already mad that they put me in that situation. Then, I ask for pain meds when it is due to stay on top of the pain. My body is not handling anything well right now. The last thing I wanted to do was rock the boat with my mom leaving. So, it gets to the point where I’m in severe pain, crying, because they can’t do anything in a timely manner and let it get to that point of pain. It’s always hours after the fact for this nurse to do something. How she gets anything done in a 12 hour shift is beyond me. But whatever. I’m working on my controlled breathing because I am not having a rapid with her or because of her. Well my heart was beating too fast for too long and it threw me into a sustained arrhythmia. So after a bunch of cardiac drugs and workup, things settled and I told her to go get the next pain dose because it was time again. That I’m so, so done with them putting my body through hell because of their incompetence. I have already been through so much. It’s crazy that the doctors are realizing how much is now being inflicted on me because of staff. I guess it’s good that they are realizing now, but ONE month! Another month in the hospital. . I’m just so defeated. I hate this body. I hate that I have to go through this. I hate that when I’m done with here that I’m going to need a whole cardiac workup, again. I hate that they
The PEG-J tube was placed on Thursday. IT IS A PAINFUL PROCEDURE. Half of the team at Johns Hopkins said it was painful, because they have to go through abdominal muscle and your gastric wall (more muscle). The GI fellow that placed my tube ๐Ÿ˜‘ said she made 3 holes instead of one so they wanted to do some imaging to make sure I was not going to leak into my peritoneal space. I had an abnormally large amount of air in the space. I was a big giant abdominal balloon after surgery. The testing was semi-reassuring that we could start feeds after 24 hours and get going ๐Ÿ‘‹ So I thought... Sunday we tried to go back up to goal tube feed ๐ŸŽ‰ Well, I have been having trouble with that tube feed from the start. Nobody wants to hear the complaints, they want to hear good results. Come Sunday night... my body is telling me something. My mom and I were working on her Relapsing Polychondritis PowerPoint presentation... my face is itchy, I’m hot and run down, chest is itchy, spreads to abdomen too... the wheezing starts up, we jump on it with a neb treatment, and then I CANT BREATHE ๐Ÿ˜ฐ they call a rapid response! I can breathe air in, but I can’t breathe the air out. They use all the medication tricks up their sleeve... I thank god I did not have to intubated. My mom was there to advocate for me ๐Ÿ’ช๐Ÿ‘Š the steroids were going to take some time to help ease my breathing.... I was placed in bipap and was able to recover in the Medical ICU... I finally had attentive nurses and doctors... they want to know the full story... be still, my heart! An actual team to take my concerns and regards into hand. I recover and am sent back to the floor... they want to start these tube feeds again! ๐Ÿ˜‘ nope, nope, nope! If there is a slightest chance of a sensitivity developing over this feed... how can I continue to “try” it... how many more times do you try it? RAPID RESPONSES- 2๏ธโƒฃ Caitlin- 1๏ธโƒฃ
Ahhh I’m freaking out. I don’t know why, because I normally do well with surgical procedures, but this time my anxiety is at an all time high! Today, I’m going down to get a GJ feeding tube placed (a tube that goes through the skin into the stomach and then a tube to my jejunum). I know this is what is best for me right now as my body tries to recover. I have just been having a hard time wrapping my head around that I need this. It is not a permanent tube that I will have. I am, also, strongly encouraged to still eat what I can to keep everything used to the natural digestion process. It will give me a better quality of life, as I am not “forced” to eat or even drink, for that matter. I will be able to better hydrate myself by bypassing the problem area, which will help me feel and heal better overall. So, all of my prayer warriors and cheerleaders, please keep me in your thoughts and prayers today. ๐Ÿ™๐Ÿป๐Ÿ˜ฅ๐Ÿ’œ . #gjtube #gastroparesis #feedingtube #pegj #chronicillness #spoonie #anxiety #tubie #goodbyendtube #missyounever #relapsingpolychondritis #relapsingpolychondritisawareness #hopingforthebest #iheardithurtslikeabitch #iwantmymom
At least it’s keeping my mind busy instead of thinking about more procedures ๐Ÿ™‰ trying to stay positive and continue on with my nursing education ๐Ÿ’ช๐Ÿ‘Š๐Ÿ˜Š . #butwewillkeepthebucketnearby #cloggedtube #ndtube #holdonfeeds #nurse #rn #rntobsn #registerednurse #hospitalandhomework #keeppushingforward #vcu #onlineclasses
Today’s shit show is brought to you by “fluid in the lungs, holding my heart & BP medication” Yesterday, my NIH doctor came to visit, he updated my status to her. Apparently, Monday ONE WEEK ago when I had a rapid response. I started vomiting, then my esophagus closed and secretions started to spill into my lungs, making my trachea spasm. I had a chest X-ray which showed that I had aspirated and fluid settled in my bases. So, today NOW we are doing an aspiration pneumonia workup, as I have been requiring more oxygen than normal and failed my 6 minute walk. My heart rate is back to a tachy mess, because they felt I did not need my heart failure medication. My ejection fraction is back up... because I take that medication. Last but not least, I’m back to being hypertensive, as they AGAIN did not listen to me that my baseline blood pressure is NOT 90/50. It’s actually 130-140/90-100 on BP meds. So now my body is showing them all of the fires that took a long time to put out. . #jesustakethewheel #operationgettfouttahere #besthospitalmyass #youcantmakethisshitup  #ctscan #heartfailure #hypertension #sinustachycardia
Update: My patience has been beyond tested throughout this bump in the road. Doctors do not like when things don’t go their way. All of yesterday, I was pretty drowsy, felt so dry, had to have someone walk beside me to the bathroom, because I was feeling like I might pass out. I tell pretty much every team that came in. I was doing awful with oral intake/hydration. I was off of the tube feeds while they decided if I need a tube feed change or not. Basically, I was feeling like complete ๐Ÿ’ฉ. About 10:30 rolls around. I’m still pretty drowsy. The nurse takes my vitals and my heart rate isn’t going below 140... I haven’t been too tachy here 110s usually. My BP is low for me, 90/50s, consistent. I muttered to her do you want me to stand (to see if I’m orthostatic). My nurse is like, “No! You stay sitting and I’m calling a Rapid Response!” Sooo the whole room becomes flooded with people from different teams and disciplines. They toss around blood clots, infection from being immunesupressed, or maybe just dehydration. 2 liters of fluid and I’m perked up. I can converse with the staff. I’m the most awake I have been all day! Could this all have been avoided? ABSOLUTELY. But who am I? Just some 25 year old complaining that she might be dehydrated. I was actually instructed to walk the unit when I was in that drowsy state when the doctor came. All because of dehydration, I had to remain on the cardiac monitor, have vitals cycling through, peripheral labs (I’m a hard stick), some blood from the port, urine sample, EKG, and a chest X-ray. Sometimes I wonder, how am I still alive? ๐Ÿค” But, seriously. . #drowsy #tachycardia #fastheartbeat #cardiacworkup #cardiac #heartfailure #dehydration #chestxray #aspirationpneumonia #pneumonia # ivfluids #lactatedringers #lr #needfluids #ivstart #tinyveins #malnutrition #youngdumbandbroke #immunesystem #immunesuppressed #relapsingpolychondritis #relapsingpolychondritisawareness
Missing my puppy girl a little extra today... I miss her sister too, of course. This is my little baby. I hope she’s at home not chewing on something she’s not supposed to. I need to get her insurance, because she’s like a 2 year old... always into something! - - - #myjazzygirl #babychorkie #chorkie #chihuahuasofinstagram #chorkiesofinstagram #mischievous #sweetgirl #snugglebug #puppiesofinstagram #puppies #sleepygirl
-The aftermath: -Relapsing Polychondritis 1๏ธโƒฃ Caitlin 0๏ธโƒฃ -Another rapid response... did not have to be intubated ๐Ÿ™Œ my mom was here to yell steroids, methylpred, steroids! Even though they said it looked like anaphylaxis. My RP has been irritated from every stressor that is put on my body. I’m not in a flare, but everything being pushed at me is causing problems with my RP. -So basically, I started to vomit and my esophagus just closed up around the ND tube and secretions were spilling into my lungs and I couldn’t manage them anymore. They suctioned me, talked about intubating because of my trachea spasming, dropping to 60s then 80s then 90s then back down again for O2 sats. But! I am lucky because my mom was here and even though it’s scary every time, because I go in and out of consciousness, she handled it well by telling them what works... I did still have to get Epi, Benadryl, and antiemetics. -So, today I am going to let my body be the boss and try to get it what it needs. - - - #gastroparesis #tubefeeds #nausea #distention #oxygen #rapidresponse #callthenih #nowtheyunderstand #relapsingpolychondritis #relapsingpolychondritisawareness
_ My mom is going to hate this picture, because all she is going to see is me not wearing my retainer after I got my braces off... sorry mom! ๐Ÿ™ƒ _ I want to commend all of the people who have tube feeds from Nose to wherever... this has been so challenging to me. The past couple of days have sucked! It’s a (tiny) 10 French feeding tube that’s stented to the end of my duodenum. I was told “ohhhh you get used to it!” _ My, oh so lovely, Relapsing Polychondritis is telling me, “not today girlfriend, or any day for that matter.” Unfortunately, cartilage is rich on your face and in your throat. My nose is on fire and my esophagus is flaring tight around this tube. My oxygen has been crap so I have had to keep that going up my nose too.  _ I feel fortunate for the nutrition, as I was slipping away the day they did the procedure. It needed to be done. I needed nutrition AND hydration. Even that has been challenging. I haven’t even halfway met my goal rate and the water flushes make me feel like I’m drowning. It all causes stomach cramping from the temperature change. So much about tube feeds that in nursing you just don’t think about. I don’t even require residuals because of the placement. _  It’s so unknown what’s going to happen to my stomach. The hope was the feed and meds would jump start my GI system and keep it moving. I would be able to have this tube removed and eat and be on my merry way.  _ Yesterday and today, I have been so nauseous and distended. In pain from flaring with my RP and being unable to take pain meds. Then, getting “real person sick.” It’s been a struggle. _ I’m still on the “YOU MUST ORDER AND TRY TO EAT” plan so I’m trying. I’m actually trying really freaking hard. When your body just does not want to eat but you force a little down. Taking my pills with applesauce, overfills me, but have to get it down! I push myself and push myself a little bit more. I will not throw this food up (well because it’s

Loading