I went into the OR at 7:30AM for another wound vac change, to get my chest tubes switched out, and to take a look at my left hand while I was in there. Like I mentioned before, the doctor decided to replace two tubes with one, and he told my parents I would just need a CT scan in the next week to check on the fluid in my lungs. Before surgery, I remembered the placement of one of the tubes was secured right under my tailbone which was very painful since I was in bed most of the time. This is when I started speaking up and advocating for myself a little more. I asked one of the residents if the doctor could secure the tube a little more to the side, so she checked with him and when I woke up, it was no longer under my tailbone and I was comfortable again (as comfortable as I could be at that time).
In Chapter 2, I shared a photo of the blister rash on my hands. By this time, the rashes had healed to scabs, and the scab on the top of my left hand was still pretty big. The wound care team was afraid it might start to get infected underneath, so earlier on in my stay in the MPCU they decided to begin the process of lifting the scab. They basically would change the dressing from wet to dry until the scab eventually came off, and when it finally did, my tendons in my hand were exposed, which the wound care team did not anticipate. When I tried reaching for a tissue box one night, I felt a pain in my hand that shot through my middle finger, and suddenly it went limp. After the wound vac change and chest tube replacement on New Year’s Eve, the doctors also told my parents that my extensor tendon was partially torn, and I may need hand surgery in the future.
I was kicking myself for reaching for the tissue box. I couldn’t believe I would potentially need an additional surgery for something totally different–especially in my dominant hand. I started to get angry, thinking that they should have just left my hand alone, since the scab on my right hand was fine and eventually fell off with no issue. I still have a scar on my right hand, but it’s nothing compared to the scar on my left hand. The nurses continued to dress my left hand, and a different Occupational Therapist came into my room one day to fit test me for a splint to help keep my middle, ring, and pinky fingers up. My index finger and thumb were functioning normally, so they were able to be exposed. I wasn’t allowed any weight bearing on my hand, so Grant and Cate made an arm rest on a walker for me so we could keep up with our daily PT sessions.
Once we went on our walk, I was starting to feel a little better. I remembered it was New Year’s Eve, and one of my favorite NA’s, Gina brought me beads and a 2019 tiara. When Gina came into my room that night and I had it on, we laughed like we usually did and talked about her kids and life. A night nurse, Tracy, who I bonded with, walked into my room after 7PM and I was ecstatic. Tracy is from Buffalo, NY and is only a few years older than me. People like Gina and Tracy helped me to forget about the crazy new life I was living. Since they mainly worked the night shifts, for those hours it was just us, and we would talk about anything and everything. It was the girl time I desperately needed.
On the morning of New Year’s Day, transport came up to my room to take me downstairs for my CT scan. Since it was a holiday, things were a little quieter in the hospital, so they must have figured this was the best time to take me down for the scan. My mom asked them to be careful because of my wound site. They weren’t as careful as they should have been, but I was no stranger to pain at that point.
The doctors reported that my scan looked good and by the time I was back in my room, it was time for PT. I got up and immediately saw fluid leaking from my wound vac site. This scared me because I didn’t know if something was wrong, or if I would have to go to the OR again. Grant, Cate, and my nurse that day told us they thought it was from build up around the wound since the tube from the wound vac was clamped when I went down for the CT scan, which took longer than expected. The Doctor came in to check on it and luckily the leaking stopped.
As this was happening, I didn’t realize the nurses were orchestrating a plan to sneak my dog Bear up for a visit. My room was by an emergency exit staircase that led to one of the hospital’s employee parking lots. The plan was to bring Bear up through there, and my parents could leave the car there for a short period of time. When I was told the plan was in place, I forgot all about the leaking and the NA brought an extra sheet in to cover my bed so Bear could hop up. When he walked into my room, I cried. I hadn’t seen him in almost 2 months. He was more timid than usual, which I’m sure had everything to do with being in this foreign environment. The hardest thing about seeing him was not only not being able to get up to greet him, but also that I didn’t think he recognized me.
All of the nurses who were working came in to see him and he was loving every second of it. He had just turned one in October, so he was still dopey and silly as ever when meeting new people. Bear stayed in my room for an hour and a half, and it was so hard to say goodbye to him. Once we realized how easy it was for him to come visit, the nurses said we could try doing it once a week. A therapy dog named Maggie May would come to see me on Thursdays, and I was so happy knowing I would maybe get to spend time with dogs twice a week. I loved the MPCU team already, but this made me love them even more.
After Bear left, my mom went back to the Airb&b to grab the spread she made to celebrate the New Year. She made taco dip, guac, and brought some wine in (not for me, of course). My family stayed until 9PM and I probably fell asleep shortly after, due to the full, emotional day.
The next day, I woke up extremely nauseous, which was pretty much the norm at that point. My parents arrived and a plastics resident came in to talk to us about my left hand. They decided that the following day in surgery, they would have to put integral shark skin growth topical on the tendons, plus a wound vac to speed up healing. On that same day, they noticed I had skin breakdown where the chest tubes were taped. The nurses replaced some of the tape, which was painful. I became upset and angry again, and didn’t want to see anyone else that day. All the talk about what was happening with my hand, on top of everything else, was getting to be too much. The only person I wanted to see besides my parents was Tess, and we continued with the OT session as usual.
I haven’t written in over a month, considering what’s been going on in the world. I thought since we’re in the middle of a pandemic that people wouldn’t want to read about the struggles I was facing last year, until a family friend with Wegener’s recently reached out to me and helped me remember why I started this blog in the first place. I had a different perspective on life when this all happened to me, and almost a year to reflect, but I now have a whole new perspective. There are people in critical condition who are totally isolated from the outside world, aside from just being in the hospital. My parents were able to sit with me and I was able to have visitors and I am now even more grateful for that. I hope if anyone who is reading this that knows someone in the hospital that they can’t visit right now, that they might find comfort knowing there are some really loving and caring nurses, NA’s, and doctors out there. I hope you know there are people surrounding them who care and who are trying as best they can to help them.
A woman named Jennifer who works in housekeeping at UNC would come into my room often and I came to know and love her. When I was still in the MICU and was having a bad day, she told me “Lord, nothing is too big that you and me cannot handle today.” I’m not very religious, but that sentence has stuck with me. Every time I saw her after that day, she would say it again, and it is something I will always try to live by.
Dear Vasculitis 