Continued from my post on my Pre-Surgery Nightmare…
My surgeon decided, a few days before my scheduled gastrojejunostomy (GJ tube) surgery, that my weight was too low to chance surgery. After fighting, crying, and refusing a third NJ tube placement, I had to get a PICC line placed. They told me it was the only way other than a NJ tube to get my weight and nutrition markers up to their standards. Keep in mind I had gone to my surgeon that morning with my father to try to straighten things out and ended up whisked to the bowels of the hospital to get the NJ tube placed, then freaked out and refused. At this point I was a complete terrified mess. I don’t know what I would have done without my father there. So anything they suggested that wasn’t a tube down my nose and would get me approved for surgery, and even though I had heard that getting nutrition though a PICC was serious business, I accepted. Looking back I’m still not sure I made the right choice.
On February 6, 2014, I was admitted to the hospital for severe malnutrition and to get my PICC line placed. By the time I was actually in a room it was apparently too late for the nurses that were specially trained to insert said PICC to come. It’s hard to explain my total despair. I had a panic attack and couldn’t stop crying. My dad sat by my hospital bed and prayed with me and read from the Bible until I calmed down and fell asleep. I can’t thank him enough for that, I’m sure it was horrible for him too, but he helped me get through it. He stayed with me all day until my fiancé got out of work and came to replace him.
The next day, I had my PICC line placed. PICC stands for Peripherally Inserted Central Catheter. It’s like having a permanent IV line, but it’s inserted through a median vein in the arm, located first by an ultrasound machine, and run up through the chest to rest in the superior vena cava. An x-ray in used to verify the placement. Here’s mine:
The line has two ports, one for things to go in (TPN, IV fluids, medication, etc) and one for blood to be drawn. It sounded okay to me, and that meant I wouldn’t have to have an IV placed for a while, and no needle sticks, hooray! Mine was placed in the crook of my left arm and then taped really heavily so it wouldn’t pull out. Of my heart. It’s better to just not think about things like that.
It was NOT okay.
For starters, I had to wait another day for the correct TPN solution to be mixed and brought to my room. TPN stands for Total Parenteral Nutrition. Parenteral Nutrition goes into the body in a manner other than the digestive tract. Enteral Nutrition goes into the digestive tract, i.e. feeding tubes. TPN is started very slowly and the patient has to be monitored for a few days to avoid refeeding syndrome. My first bag was a standard solution that can be given to anyone with basic electrolytes and dextrose, started at a slow rate and slowly increased. I was started on a 24 hour cycle. The next day I was given a TPN bag formulated to my needs with the addition of lipids. I was kept in the hospital until Tuesday at 5 on a continuous infusion. The nurses tested my blood sugar every couple of hours and I had blood drawn a few times a day. I was given IV potassium twice to correct my low potassium levels.
I’m not particularly proud of this, but I raged against every second that they kept me in the hospital. The nurses and doctors kept telling me horror stories about refeeding syndrome. Refeeding syndrome basically means that if you are malnourished for a long period of time and suddenly start receiving normal nourishment, you can get severe electrolyte imbalances, which can cause your heart to give out. It can be lethal. It was first described in American prisoners of war that were released from Japanese prison camps into American custody. At the time, I was so stressed and freaked out that all I could think about was getting out of the hospital, and I tried unsuccessfully to convince them to discharge me.
I was really angry that they had let me believe everything was fine and that I was going to have my surgery and then suddenly I was too sick for it? I was afraid, felt tricked and trapped, and felt like my doctors had no idea what they were doing (still struggling with that one). I knew I was really sick, but it’s weird, I would be kind of getting by at home, at least surviving, and then once I was admitted to the hospital they were worried about everything. It was a strange feeling, thinking that all these things were wrong with me that were severe enough for them to keep me in the hospital once I got admitted. Apparently not worried enough to actually fix the problem, since it took two years for them to place the feeding tube.
Please read more about my TPN experience in my TPN/PICC Line Post #2 – TPN at Home