Wednesday, June 8, 2016

Tuesday 6/7/16

I ended up in the er in Sun City last night thinking for sure my tube had coiled or malfunctioned. My feeds have been 20-25ml per hour with big rests in between for two weeks now. And the night before last, I started taking medications that were being pushed through my jejunal tube and then burning in my stomach along with it. To me clearly the meds were going into my stomach some how. But my tube looks good via x Ray and I was sent home to decompress tummy (open my g tube (the one that goes into my stomach) and hook it up to a draining bag so it can vent air and drain contents of bile or foods. Which is helping and I grossly drained cheese from 24plus hours after eating it. Eww! Welcome to Gastroparesis where your gi system won't digest the things you eat. I am now on NO formula just pedialyte. And my mom went to get Popsicles and jello  which with being hooked up to a drain bag will practically go in and straight out into the bag. So yeah no nutrition is my biggest concern (well and hacking my guts up for hours and massive pain despite taking high doses of everything medically possible for my stomach) again welcome to Gastroparesis. It's a game sometimes a game that frightens me. But I can't change it so I've been praying. When I got to the er (after a late appointment due to doc being late, then the extra hour drive to that particular hospy, then the getting lost because a main road is closed we finally got to the er! They were empty yay ...but a nurse flipped out on my and refused to use my port due to me being the one who accesses it... I told her i had been trained and have even had surgery with my own accessed ports (but she couldn't prove it was sterile) despite the fact that I do it sterile always and am anal about it and wear a top of the line bio patch all which the lines team said and signed it off.( even if a home health nurse did it she still could not have proved that it was don't perfectly) I had to wait like an hour for any meds due to this and the whole time a wretched and wretched I'm pretty sure I have injuries and lots of blood vessels are mad all over my body.  Which only made my migraine worse. I am irritated I get punished for being amazing and taking over my care. I have no choice but to do my own port care and if they re-did my port that would have been an added infection risk. I prayed during that long time waiting for a lines team and she was an angel sent to me! Seriously! She was so kind and was like, "this is perfect I don't know why they would refuse this port." She knew I knew what I was doing and she signed off to use my port instead of adding an infection risk and I am just so grateful for her simple kindness towards me. And when they sent me home I cried (not because I was being sent home) but because my tube was fine and I've been so sick and to learn oh it's not an easy fix its my body. I broke down. I'm hungry and tired and I got home at 1:30am (well in Mesa where we stay) but though my tears came of fear and frustration I used my faith some more and prayed and I has the sweetest discharge nurse who was simply gentle and kind and I was like I promise I'm not upset about going home at all I was just tired of hurting and sick of being sick . It's hard. But those pain meds didn't help the second dose just threw me into depression. Pain meds are wonderful for me at times in small doses like for my migraines that are so out of control. Or my endometriosis pain. But those stronger ones make me sad. Because my diseases all effect each other and pain is a domino effect for me it throws me into a pots flare and so now we have to try our hardest to keep this body calm and not stay or go into stressful situations physically. My kidney doctor is upping my meds and we are cutting back on the amount of Iv fluids (hopefully in half) and my potassium is low from the meds she has me on. So I now will be getting potassium, magnesium, normal saline ivs. It's a roller coaster ride my life. I hang on and keep going letting my faith guide the way. And I never give up even when I cry like I'm two. I cancelled my urology testing. This body can't handle it right now. So will be rescheduling. For now our focus is tummy control and feeds(nutrition)-Chelle