My first full day in the MPCU was December 13th, and that was the day I met one of the Respiratory Specialists. He is one of the nicest people ever and oddly I looked forward to trach care from then on because Abraham and the rest of the team were so great. Having a trach is not only traumatizing because of the tube in your throat and knowing you’ll have a permanent scar/reminder that you had one, but taking care of it is a whole other thing.
This was the time when I started to become fast friends with Grant and my Occupational Therapist, Tess. December 14th is the first day I met Cate who is another Physical Therapist at UNC and also is engaged to Grant. We had heard so much about her leading up to this point that when she came into my room for an evaluation, we basically screamed. I’m pretty sure she took a couple steps back because we must have overwhelmed her with our reaction. Most of her and Grant’s patients would refuse to get out of bed when it was time for PT, so when I basically shrieked with excitement as she walked into my room, I think she was surprised. Grant is hilarious and it was honestly fun to make him laugh with my morbid jokes, and Cate is one of the most kind people you’ll ever meet, but also has a really feisty side; mostly when it comes to her and Grant’s sports rivalries.
Tess bonded with my mom as well and that was really special. My family loved all three of them and they basically became my emotional therapists as well. Those friendships were and still are so important to me. They’ve all been with me during really hard times and conversations.
This was also the time frame that I started tube feeds which my body had a love/hate relationship with. It made me really sick at times but again, it was 100% necessary because of all the muscle and weight I was losing by lying in bed almost all day, every day. When you have a tracheostomy done or a breathing tube taken out, there are protocols as to when you can start eating solid foods again. I had to pass a “swallow test” to make sure I wasn’t aspirating while eating/drinking. The last thing I needed were more lung issues. I ended up taking the test and “passing with flying colors” as my mom wrote it in her notebook.
The nausea was worse than ever during the time I spent in the MPCU. A word of advice, don’t eat anything you love if you’re sick in the hospital and are having a hard time keeping food down. If you throw up something you love, it’s hard to erase that memory. Stick to the brat diet and protein shakes if you’re constantly getting sick like I was.
I passed the “swallow test” on December 16th and was able to eat some food without getting sick. My cousin Matt, his wife Maggie, my cousin Chrissie and my friend Brittney all drove in from Charlotte to come see me. They came to see me several times during my stay and it really meant so much to me. It felt great to see some familiar faces and hang out with my friends for a little while. I would spend a lot of time with them in Charlotte so it was really hard to say goodbye when it was time for them to leave. It was sinking in that my life was turning into something different.
After Matt, Maggie, Chrissie and Brittney left, our family friends Willie and Susan brought us dinner and beer (for my parents–although a beer would’ve been nice during that time). My dad and Willie met through work back in the day and have remained friends ever since. They live in Raleigh so it was an easy drive for them, even though I truly believe if I (or either of my siblings–god forbid) were hospitalized anywhere in the world they would have came to see me and my parents. Unfortunately, their son passed away at 20 due to brain cancer and I can’t imagine the pain they and their daughter feel inside. I think they knew how much support my parents needed, even if my parents didn’t realize it at the time. Plus, they are hilarious, loving, and represent southern hospitality in so many ways. I basically was addicted to Cheerwine after they brought me some (it’s like a red cherry coke made in NC). I can’t thank them enough for all the times they came to see us.
The next day, my Nana, Aunt Gerda, and Uncle Don flew into Raleigh from Boston. Don is one of my mom’s younger brothers and is an ER Physician. I couldn’t believe my Nana got on a plane, but I was so happy to see her. It also made me nervous because I was worried that she might have thought she wouldn’t see me again. During that time, I was still going to the OR every Monday, Wednesday and Friday, so I felt guilty when people would visit from out of town in case things didn’t go as planned, which ended up happening later on in the Spring when a couple of my girlfriends were visiting from NY (I’ll get to that later). Don, Gerda and my Nana flew out a couple of days later, which happened to be the day of my 15th surgery.
Dear Vasculitis 