Tuesday, October 11, 2016

Tube change coming soon 10/11/16

Though this week is nerves for me... I choose faith in God's plan for me. He in fact knows the whole picture when I do not. I may have a broken body. I have to seek treatments. I may need tubes. I have to have procedures. But no matter what he is there for me. He knows. So yes, nervous is me but I think it's normal and I may be nervous but I will walk in faith, with the Saviour by My side this week. 
Okay, I am having surgery for my feeding tube to be exchanged (this guy above is moving out... Look at that hot mess! Seriously this tube has been a royal pain constantly.) for a new one (low profile) on Thursday.
(This is a low profile GJ tube. The tubes them selfs on the outside actually come off when not in use.) I am excited for two reasons... 1. My new tube is a low profile button tube. I won't have to see it or tuck away a long tube that shows icky bile. Oh and a clamp! A clamp!! 2. I think the tube I have now is malplaced at the moment as I struggle with intense nausea with feedings. That sickness stops when I pause feeds. I also taste medications I flush into my j a sure sign it's backing up into my stomach somehow instead of staying in the jejunum. (Small intestine I feed into) ... Well hey there are 3 reasons! I also have a nice slab of painful scar tissue. Only with this tube have I ever had any scar tissue. (So the doctor could laser that away if it needs to be.) ... The kicker is I am nervous because since my last surgery the end of July (afterwards)  my ability to eat by mouth changed a lot. In a good way. No rhyme or reason... (Now that was a much bigger surgery and I was out for hours verses 15ish minutes.) That's neuro for you! It does not make sense but hey!! we will take it! So I have been eating a little and just enjoying my time as the doctors have told me to do.... it can change at any time. They told me to just enjoy it now... So in the next 48 hours though my diets strict I am pretty sure I will eat all I can tolerate. (just in case)I wake up to no bites or sips Gastroparesis ville. (We don't know that will happen but well I woke up from my last surgery with better GI functions.) But I am being positive and praying that it continues to do "better" and that I will feel better after (hopefully) fixing my j tube . That will allow me to better feed formula and not go around without good nutrition. (I actually hope my tube is malplaced because otherwise we have a hurdle to jump and figure out what's making me so sick.) My nutrition has been bad for a good two weeks. I can't eat veggies and I can't eat fruit and I can't eat meat. Literally. They are too hard to digest... So though I try... I really can't... In the first place eat enough by mouth to stay alive and the nutrients aren't even well rounded at all (though I try to round my best nutrients out)... Another thing bugging me is the worst... Not the last time but the time before (so 2 tube changes ago) my anesthetist (who I know now I am only to have a doctor of anesthesia over me with my POTS) but he was a fruit cake and I never cared for him. He had the attention span of the dog off of the movie Up ..."squirrel"... (Literally in pre op he walked away as I was talking to him. Me and my Mom were lookin at each other and though we both were concerned we whispered, "squirrel") He took me to the lab and put me out before my doctor came in the room... And while putting me out he started hitting my arm and yelling at me that something was wrong. My arm was splotchy and red (probably POTS blood weirdness as My arm was fine later) he told me as he was hitting my arm,"to not fall asleep. He needed to know if I was okay." (That was frightening and apparently traumatic) because uh he pushed anesthesia through me and I fell asleep. (Despite my scared to death efforts) I learned a very valuable  lesson that day. I will never ever go forward with a procedure if I feel uncomfortable in my care ever again. Then I found out later he gave me an anesthesia  that should never be used on me with my condition. (So that has me nervous as all could be.)  I woke up to my doctor yelling at that anesthesia nurse... It's what woke me up actually. Then my doctor kicked him off his services... But no worries I won't ever let another do that to me again. I will wait for someone else to take me... I will speak out. So that's my update. Understandably. Nerves. -Chelle (P.S. My sweet friend is having a procedure on her heart today so please send those prayers to her today!! Thx)