Showing off my staples after drainage tubes came out... please don't mistake post-op picture for nudity... this is reality.
So we left off with me being ALIVE!! Little did I know there was lots of hard work left. After all the tests the sedation was starting to wear off and the exhaustion started to take over. Coming back off the Vent was way harder than I thought. It felt like the second the drugs wore off, my new lungs had to keep up with running a marathon that I didn't train for. I begged, writing on my whiteboard for what felt like forever to pull the breathing tube. I have to admit that at my weakest moment I was seriously considering giving up, to just stop trying. When the Dr's finally gave the OK after an hour, i had to wait another 20 minutes because the "nurse who shall not be named" left a peripheral IV line in my arm for over 24hrs that wasn't working but just kept changing the dressing. So she had to call another nurse in to get a second peripheral line in to draw labs right before they take out the vent. So FINALLY the second nurse got blood and started to wean me off the ventilator slowly so I was breathing on my own more and more with the tube in until i was at or around 50%. The breathing tube was removed and i was able to take my first deep breath.... AGAIN. I was an emotional rollercoaster... exhausted, angry at the first nurse who was obviously negligent, but also so thrilled to be breathing on my own and alive.
That night was a little crazy, i was no longer sedated much at all and I was extremely paranoid and not quite with it. Neuro came to check me out right before i was taken off the breathing tube and again after they looked at scans and they didn't see any signs of brain damage, so i know i'm not actually crazy but the next two nights you would have thought I completely lost my mind. I kept telling Johnny about seeing a cat under the bed and I swore the guy in the TCICU had a hooker in the room next to me and they pulled his foley out. hahaha he didn't believe me but I was convinced and still think I still think maybe his wife was visiting at 2AM or something and not hookers but I KNOW the next day they had to put another foley in. Either way, he stayed with me the whole time to ease my crazy anxiety and delirium in the ICU while I attempted to sleep.
Feb 14th- After barely any sleep overnight we realized in the morning that one my chest tubes kept pushing out and leaking so we planned to remove soon because I had 3 others and it wasn't get much output, just slowly leaking. They also wanted to remove my central line since only the heart monitor part was removed when I flatlined. At this point I was fed up with my nurse who was still assigned to my care?! She spent the entire morning telling all the other nurses how traumatized SHE was and how I had a panic attack which caused a vasovagal syncope/response (basically a quick drop in blood pressure and brief unconsciousness for unknown reasons). She kept trying to push blame onto me for "doing that to HER" and I felt an extreme sense of anger and guilt at the same time. I started to question myself and ask myself if I really did this to myself somehow?? It was a rough day emotionally but Dr who saved my life came in and reinforced the fact that it was NOT a vasovagal response because I didn't pass out, I completely coded and had no pulse AFTER a line removal which was like 99% likely to be an embolism. Unfortunately they have no proof because by the time they got me to the scans he believes it absorbed into my body. The doctor apologized for having to put me back on the vent and the only thing I could do is cry, because I definitely would have died without him and I was just so grateful for his quick response, diligence and treatment with my family.
Feb 15th- NEW NURSE!!!! I woke up so happy to have some positive energy nearby. She had seen all the notes in the chart from the previous nurse but the nurse obviously was trying to cover herself by diagnosing that she thinks happen... when the doctors notes all say different. So I explained what actually happened and made it clear the I don't doubt her abilities but I'm only comfortable having my central line pulled by a doctor from now on. She was comforting and completely on board and excited to find her friend who was a doctor and "amazing at central lines". Then another doctors came by and it just seemed like they were competing to get to me first. I wasn't going to interview both candidates I just said whoever can get to first and is a skilled dr, gets the job. haha. The line came out easily and smoothly. Later in the day I started reflecting and getting paranoid that in 2 days that nurse would be back in the ICU and could attempt pulling lines without being trained or re-trained how to do a line pull and potentially kill someone else. I spoke with the head nurse coordinator of the TCICU to go over my concerns the last two days in detail. Later in the day I stood up and moved to the chair with the help of PT- my first time out of bed in days so I was very weak but i'd push myself through anything to get out of the CTICU. By the evening I was free of the ICU and moved to the transplant floor, which is the top of the building and is dedicated just to patients post transplant!! The second I got to the floor the nurse took one look at my arm (with IV still in- not working) and I realized my whole left arm was 3 times the size my right and it was hard and painful to touch. She immediately removed the line and agreed that it should have been removed days ago.
Feb 16th- Waking up from a good sleep with my private room and no crazy distractions from ICU was amazing!! During rounds I was told that today would be my first bronchoscopy. During a bronch, they put me under and go up my nose and down my throat into my lungs to check for rejection or infection. They squirt a lavage into the lungs and suction it back out to clean the lungs. They also take biopsies as well. I was a little nervous going back under after everything that has gone on in the last week but I knew how important it was in monitoring my health. After the bronch, I was still sedated for a few hours, so I was brought back up to transplant floor and rested for most of the day. This was the Friday before presidents day and although I had my vent and NG tube out, I still wasn't cleared from speech to eat yet. They needed to wait to clear me for a swallow test before I was given food. (it has been 3 days since i've eaten now.... starting to get HANGRY)
I begged to do test that day but they said schedule was full and but they didn't have any openings for an extra test that day and they didn't have staff for the weekend OR monday because of presidents day. I was very upset since I already went 3 days with no food. Shortly after the supervisor came in and did a bedside test... I drank some green drink that stained my mouth and ate some applesauce and graham crackers. It was the most excited i've been to eat in a long time. I passed and was allowed to eat for the weekend,Yayyyy!!!
Feb 17th-20th- Over the weekend I started to get some energy back. I was eating, walking with PT everyday once a day and with johnny or my mom once more during the night. I still had a 3 chest tubes in but on 20th we began pulling the tubes one by one. It made it easier to walk and do mini stairs with PT and I finally felt some progress. It was amazing to feel my muscles get tired BEFORE my lungs for the first time in like 10 years. I felt a sense of accomplishment and hope for a whole new future.
Feb 21st- Unfortunately overnight I started to feeling a change in my stomach. My stomach felt different the surgery but it was just full feeling. This was a new kind of pain. I was hunched over for two nights in a row with cramping and diarrhea and nausea out of nowhere. The pain was making it hard to eat and i completely lost my appetite due to the intense pain. Of course having many hospital stays previously, I suggested to take a stool sample and test for C.diff (a common bacteria that colonizes the stomach and intestines which results in diarrhea and cramping) which is often spread in hospitals. I tested negative so after another day and night of no food staying down and intense cramps and diarrhea(poor nurses).
Feb 22nd- I was able to still walk and get exercise in between periods of cramping but i was definitely not feeling as stable so we started extra fluids to make sure I wasn't dehydrating. Test results came back with positive for Norovirus. Its commonly caught from ingesting contaminated food... and normally goes away in 2-3 days for an average person. Lucky me... I have an extremely compromised immune system from the medications post transplant and they warned me it could take 10-12 days to pass. There is no treatment for the virus as well so I just had to stay hydrated and let it pass. The same day i was given this news the Doctors started to talk discharge because they couldn't "treat" the virus and "i'd do better resting and waiting for it to pass at home". I was very hesitant because i felt so weak still but I listened and agreed to go home the next day to my own bed.
Feb 23rd- The last of my 2 drainage tubes were removed and I was discharged by the afternoon.
Part 3 in the works- Thanks for reading!!