Welcome back! Anthony and I only had a 21 hour day yesterday! With flight delays and all kinds of stuff, we didn’t end up getting home to Fayetteville until about 1:00 AM! Is this time change messing with anyone else? Also, as I’m starting to realize how long this story is (how in the world are we already up to Part 14!?) I’m thinking I might start sprinkling in some other posts, just for fun! What do you guys think?
As for today, we’ll continue with this story!
Four days of being home, eating, doing life and feeling pretty decent went by. Then, I had my first bad night. It might have been a combination of me “over-doing it,” and eating too much – I couldn’t tell you exactly what triggered it. But I had my first bad night outside of the hospital. Four days was a pretty good run at it though!
Wow! What a fun-filled weekend! We are currently waiting at the airport, as our flight plans didn’t work out as they were set to. But that’s okay! I’ve been wanting to have some spare minutes to get on here and post the next part! So here we go!
I left you with the exciting news that I was starting on clear liquids. In this post, I have to begin by telling you that 3 days later, suction had to be hooked up again. While my gut was moving some, my stomach was not emptying. Things were so backed up that nausea got the best of me and I had to go back to nothing by mouth. I was bummed. This was not how things had ever gone. In a typical hospital visit, I would have been on to mashed potatoes and chicken fried steak! But this time, I could only dream of eating those things.
Hey everyone! We are on our way to Sacramento, California to attend a seminar for TPN patients! We are so excited to have been invited to come to this event and provide input on some new possible products and to learn more about what’s happening in the TPN world!
Jumping in today where we left off yesterday!
The very next day, I was on my way to my new (shared) room at UCSD! I had my sassy powers all lined up to get into the first private room available! When I arrived, my new roommate didn’t even wave back when I was wheeled into the room! (If you’re up on your TV shows – as Stephanie Tanner from “Full House” always said, “HOW RUDE!”) Now for the good news – this hospital was swanky as all get out! It felt like a nice hotel. It had wood floors, big palm trees in the lobby, built-ins for the TV and cute little drawers for my clothes and stuff! And even better, before I had spent a full night, my nurse came in to tell me that my private room was ready! Oh thank heaven for diligent nurses.
After a couple of days with more x-rays, blood sugar and blood pressure drops, my doctor came in and had a sit down with me. He told me I needed to start back on TPN. He said they were going to place a PICC line (remember the last time I had a PICC and didn’t use my arm for the entire week of having it? Yeah, that kind) and get me to a baseline of health with the help of TPN. I told him I did not want to lead them to believe that I was going to continue on TPN and I wanted answers to how I was going to get better. But at this point, I did agree that TPN was the safest option.
While I was getting mentally prepared for the PICC line placement (I thought I would have at least a full day to do this since hospital time usually makes things take seven times longer than you’d expect) someone knocked on my door and came in. They had the terrible cart with them that means PICC line time. I hadn’t even had an hour to process this mess! Get out of here! But no, it was time.
My first question was what I was going to be given so I didn’t remember the procedure. I can’t handle vein talk. I can’t deal with people looking around on my arm with a sonogram thing to find the perfect vein. I just cannot. I knew I wasn’t going to get through this without some help from some drugs. After we sorted this all out and I was less anxious, I got my second PICC line placed and they got me started on TPN!
I left you on that first port infection cliff hanger, so that’s where we’re starting today! In the summer of 2011, after my senior year in high school.
Central line infections are no joke! They can lead to sepsis and even death if not treated properly. I had gone five years without getting an infection, which is pretty impressive. But this led me to believe there was no way I could get one even though I’d been warned about them since the first day. Chills, fever, body aches – this list sounds a lot like the symptoms of many illnesses, doesn’t it – especially the flu. The kicker was that my “flu” only happened at night when I was infusing TPN. I should have realized way faster than I did.
I finally connected the dots, accepted what was probably happening and ended up in the ER. They immediately started me on antibiotics. After several days, when my cultures (blood tests that are observed for several days to see if they grow bacteria) came back clear, I was sent home on IV antibiotics.