Playing catch-up makes for long posts, please bate with me.
I saw my motility doctor in July, I was having more nausea and vomiting, so I assumed my gastric neurostimulator had a dead battery. The nurse scanned it with the handheld computer and assured me it was still working properly.
The last four days of July and the first day of August, I was in Scottsville, Kentucky at pediatric pain camp. As I have mentioned before, The Center for Courageous Kids is an amazing camp for kids with chronic illnesses. Camp totally exhausts me, but it is somewhere I can go, feel a sense of belonging, and try to make a difference in the lives of others.
After returning home from camp in 2017, I was sick for several months. This year turned out about the same. I came home from camp this year bleeding from my bowels. I wouldn’t get it checked out while I was at camp because I didn’t want to have to go to the hospital in a town I wasn’t familiar with and my family four hours away.. I did go to see my primary care physician when I came home. It turned out to be a tear. A few days resting at home with my feet elevated and it healed.
September and October were pretty rough months. I just blew my poor health off as exhaustion from volunteering at camp. With my body already weak, I figured I was just having major flare-ups of gastroparesis and complex regional pain syndrome.
October 2, I went to see my primary care physician because I was passing blood vaginally when my bowels moved. I’m sure some of you, my readers, are screaming, “Too much info!” I don’t normally share this type of personal info, but it’s a part of my nightmare from October. We knew from a previous test that I had a mild to moderate rectocele and my primary care physician was concerned it might be opening up as a fistula, so she ordered a CT scan My insurance refused to prior authorize the test and I couldn’t afford to pay out of pocket, so the CT could not be done.
The next morning I was having abdominal pain and pressure. I went to the bathroom and passed nothing but blood from my bowels. My primary care physician had instructed me to come back if anything seemed worse. My insurance still wouldn’t agree to a CT scan, so my primary care physician told me to go to the emergency room.
After sitting in the waiting room for over two hours, the pain and pressure was so bad I was feeling like I was going to pass out. I kept feeling like I needed to have a bowel movement, but couldn’t. I thought something was about to rupture, but thankfully nothing did. The emergency room wasn’t much help. They gave me meds to ease the pain, verified I was passing blood, and released me with instructions to have a colonoscopy in two to three days. That was October 3.
On October 8, I had a routine appointment with my gi motility team This time, they scanned my stimulator and confirmed that my gastric stimulator was now showing that it needed its battery replaced. We also discussed my slow colonic motility and the bleeding issues I had been having. The doctor put in orders for me to be scheduled for a colonoscopy, a battery replacement surgery, and an appointment with a colon surgeon to discuss the possibility of doing a trial sacral nerve stimulator to see if the would help with my delayed colon.
The doctor who had treated me in ER had recommended a colonoscopy in two to three days, but the earliest they could schedule a colonoscopy was October 25. I knew that I needed the colonoscopy, so I agreed to take that appointment, even though it was my birthday. Happy Birthday to me, I got a colonoscopy! Yes, they did sing Happy Birthday before sedating me.
Everything was normal with my colonoscopy. However my picc line was hard to flush, like it gets when it is clotting off, so my doctor ordered cathflo to unclot it. My picc wouldn’t unclot, so the doctor started working on trying to get the picc line replaced because I had several surgeries coming up.
In order to keep me from having to travel three hours to and from the hospital where she works, just for a picc line replacement, my doctor scheduled for the replacement to be scheduled at an affiliated hospital closer to home.
October 30th, I arrived at the hospital and reported to registration. The lady at registration confused me, because she kept referring to my infusion. Looking back, I wonder if that was a foreshadowing of what was to come.
When I was called back to the heart lab, where they we’re to replace my picc line, I found out a mistake had been made in the computer and I had been listed as having an infusion .However, when the picc team as contacted, they had me listed as a picc placement. The procedure being done was updated in the computer and I was ready to roll. Or so I thought.
The picc team arrived to put the picc line in. Mom was sent back out to the waiting room for what was expected to be a thirty to forty-five minute procedure. It was finally time to begin.
At this point, my vein was located by doing so ultrasound of my upper arm, I was covered in sterile drapes, my left arm was numbed, and one of the two picc team ladies began trying to put a picc line in. After what seemed like a long time, she explained that she couldn’t get the wire they use when placing a picc line to feed through my vein. So she decided to try the other arm. She removed the picc line that wasn’t working properly from my right arm and repeated the process. She ran into the same problem on the right arm. So, she traded places with the other picc team nurse and let her try.
The second nurse hit a nerve and I nearly jumped off the bed. She said, ‘I think I hit a nerve.” I told her I knew that’s what she did. She said it was hard to see nerves on the ultrasound machine. She continued to try to feed the wire in, but when she hit the nerve for the third time, I couldn’t take the pain any more and told them I was finished.
The nurse mentioned trying in another vein, but I wouldn’t agree. My right arm was hurting so bad from where she had hit the nerve that I was in tears. The picc team cleaned up, suggested I might have blood clots, instructed me to call my doctor, and left.
The nurse that had called me back and put all my info into the computer prior to the procedure came in to tell me I could get dressed and leave. She had me call Mom to come back. I was in a lot of pain, but knew it was because the nerve in my right arm had been hit while trying to place a new picc line.
As mom came in, the nurse warned Mom that I was in a lot of pain. The next words out of the nurses mouth shocked me. She looked at Mom and said, “She probably feels like she’s been tortured and put through hell. They stuck her SIXTEEN times trying to get it in.” Even today, two months later I don’t understand why they tried sixteen times. They had used localized numbing medicine to numb my arm, so I didn’t realize I had been stuck that many times.
Getting dressed to go home was a new challenge. Both arms felt limp and life. The right arm also felt like it was being torched. Mom helped me get dressed. I asked for discharge papers, but the nurse said I didn’t have any.
I was in so much pain when we made it home that we went straight to see my primary care physician. A knot had popped up near my elbow, so she sent me for a Doppler study to check for blood clots. Thankfully none were found.
In the mist of all the pain, I still had my sense of humor. Due to storms being predicted Halloween night, trick-or-treating had been moved to October 30. I jokingly told Mom we should stop at all the businesses to get candy. However, I wasn’t sure if I should say I was a sprinkler or a pincushion.
What we arrived home, I just went straight to bed. I felt like I was living a nightmare and was hoping to wake up and it all be a bad dream.
Mom took some pictures of my arms that night. Here they are. You can imagine how bad they bruised over the next few days.
Stay tuned for what happened next.
Living Life with CRPS and Gastroparesis 
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