Showing posts with label TPN. Show all posts
Showing posts with label TPN. Show all posts

Thursday, May 12, 2016

My First Week Home with TPN

Living with a PICC line is everything you would imagine it to be...overwhelming. A lot of supplies are delivered to your house (A LOT), a machine is delivered, the TPN and the vitamins too, information about TPN delivery is explained, nurse visits are explained, phlebotomist visits are explained, how to hook up the TPN is shown to you, and then there's the PICC line itself. 


...it's mind boggling. 

Hooking up the TPN takes roughly ten minutes or so. You need to make sure that you have all of the supplies you need because the very first step is washing your hands with special soap. If you touch anything other than your TPN/PICC supplies, you have to wash again. One night, I had to wash THREE times! Many times I get hot and tired half way through the set up process and either have to sit down or have to ask my mom to take over.  

Sleeping with a two foot tube snaking out of your arm is not easy either. The TPN bag and pump reside in a backpack on the floor beside my bed. I then put the excess tubing on top of my comforter so that I am "free" to turn on to my right side. Even when I am asleep I am thinking about the tubing, trying not to yank it out. We don't want that to happen!

I'm hooked up to TPN for 12 hours straight, so if I hook up at 5:30pm I disconnect at 5:30am. I've put off hooking up until 6:30pm or later so that I can get a little (hopefully) get a little more sleep. 

TPN is NO joke. It's not something you mess with, hope for. But when it's necessary, it's necessary. Unfortunately, for me, it has become necessary and I hope that it helps me. I hope that it helps any person on it. 



Wednesday, March 23, 2016

My March Madness

Spending ten days in the hospital is rough...on anyone. You get ZERO sleep because taking your vitals at 12am is of great importance, for some reason. And drawing blood at the crack of dawn is of great importance too. Not to mention the beeping, the buzzing, the patients screaming, and the random medications that get administered at all hours of the day and night. I lucked out in that I got an isolation room, so it was pretty air tight and quiet...mostly. Still not much sleep though. 

I landed in there because my Gastroparesis--and apparently IBS--were out of control. I had been vomiting for 16 DAYS straight and I just could not keep anything...ANYTHING...down. Initially I was in there "for observation" but then it turned in to something so much more. 

The Internal Medicine doctor that saw me that first morning (I was admitted at 12:30 am on Wednesday March 2nd) admitted that he knew nothing of my condition and would defer to GI that would see me later in the day, but he thought I would be going home. I had not eaten the food brought to me that morning, didn't eat that afternoon, and by evening didn't eat either. When GI came, he thought I needed an NG tube and wanted to do tests for auto immune diseases. 

The next morning I turned away food and was visited again by the same Internal Med doctor who thought the NG tube would not help, but said "but your condition is above my scope of knowledge." My thought...then don't give me your opinion on it. A couple of hours later the NG tube was placed. It took three tries to get it in. The first try resulted in a big wad of it coming out of my mouth. The second try resulted in it just hitting the back of my nose. The third try was a success. 
It was slow going at first, but eventually it began sucking stuff from my stomach. It's an odd feeling, to be honest, but the relief you get from it is better. The nurse I had said that the amount of stuff coming out wasn't the problem, but the color. It was an off-putting hue--I'll leave it at that. 

Fast forward a day and a new GI came in and he looked at new x-rays that had been taken of my belly. Potassium pills were just sitting in my stomach like two BFFs. He said I was "FOS" and had a big gas pocket in my stomach. Based on that and my other issues (POTS, migraines, peripheral neuropathy, vertigo) he thought I was having a complete neurological breakdown and needed to have TPN and go to UCLA for better help. 

The next morning I woke up, my nose leaking puss. I buzzed my favorite nurse, Lesly and said "Uh, I think we have a problem!" 
She goes "Oh. My. Gosh!" Runs and pages the doctor over and over. I was having a severe allergic reaction to the bandage holding the NG tube in. By the time he finally came we had to take it off because it was peeling off from puss leakage. 
The doctor decided to put me on iv Benadryl and ointment on my nose due to the reaction. And NO MORE TAPE!! 

About an hour later the CNA comes to take my vitals and it hurt. I look down and my left elbow is swollen. Two days before they had started another IV in my right arm because my left arm was swelling; however, the vein was too small so they kept the left arm open for medications like phenergan and potassium. Seemed like the vein was going, so I called Lesly. Again she says "Oh. My. Gosh!" And takes out the IV. 

Finally they decided to put a PICC (Peripherally Inserted Central Cathiter) line in and give me TPN. When you're on TPN you can't have anything other than ice chips and sips of water, so I was on the yellow bag and ice diet for 4-5 days. 

Then along came the THIRD GI and she thought this whole episode was IBS gone wrong. I had to have GoLitely pushed down my NG tube to clean out my bowels. I will say this:: if you HAVE to have that devil drink, having it through the NG tube it the way to do it. But I spent the evening and night shivering, crying, and in pain. She also gave me some shot that was supposed to make my bowels move--it didn't--and then she decided to try and get me to eat, so it was Apple juice down the NG and then Boost--that was HORRIBLE. But I ultimately was able to get the NG out, food down, the PICC out and then home. 

The directions I got going home were to consume 3-4 Ensure or Boost because it would put me close to 1,000 calories a day. If I could get in some soup too, great. I've been struggling to get in much of anything more than 1-2 Boost or Ensure and a little soup. I've lost more weight (I went into the hospital weighing 165 and now weigh 159) and have trouble with nearly passing out. But I'm trying to stay positive. 

My referral to UCLA went through, but I won't be seen until November. We're hoping that they'll get me in sooner due to the complexity of my condition, but who knows. I'm sure that's how most people feel about their conditions. On the upside, my nose is normal again!

(The progression of my nose. Top left is bandage on [duh]. Top right is when I realized I was reacting to it. Middle left is right after getting the bandage off. Middle right is a couple of days later. Bottom left is 3 days before I went home. Bottom right is the day I went home.)