So sorry to everyone who was reading my blog and then I deleted all my posts and stopped writting. I am not sure how often I will post, but whenever there is a lot of stuff happening I'll try to post then. This blog is mainly for my medical stuff, to help my friends and relative kept up and such but other things in my life will briefly be mentioned
So as you may not have known I went to a camp in Missouri for 3 weeks to get in touch with my spirtualality. I left February 3 and came back February 23. The last few weeks I was there I notice I had some kind of infection around my G-J tube and it sent me into a flair up. I got home and went to the doctor and she tested it and a few days later it came back to be MRSA and Psuedomonas. I then was taking antibiotics for that. I ended up starting my J-tube feeds to give my stomach a rest. About six days later I was flushing my G-J tube and the balloon burst and the whole tube started coming out of my stoma.
I then had to go to the ER in Orlando. My GI did not want to do the surgery that night to replace a new G-J tube so he put in a temporary G-tube. He then told me that, me and him would talk about putting a new G-J tube in the next day in the clinic. So the next day comes. I see him in the office, kinda mad, becuase I have a feeling he is not going to do the surgery. Anyway I go in and he is talking to me saying, well I know you have flair ups every now and again and sometimes you are not using the tube and that he wanted to see how I can just handle with a G-tube. I was going crazy saying it's the same as if I was eating and blah blah blah. I then asked if I could get an NJ tube for a month to see how that would go and he said no. He said he didn't want me to go under anestisia. I asked if I signed the paper to do no anestisia would he do it and he still said no. He wouldn't even do the NJ tube which does not need to be done with anestisia. It can be done in IR. Or even an ND tube might have worked. Nope. You wanna know his idea?... Ya ok he said, "I want you to do 15ml for 16 hours." I'm like your crazy! That is 250 cals a day! No human can survive with that many. He told me I could go to somebody else if I wanted to. So that is just what I did. And that is where I am trying to get to because my appointment was today. Let me just finish this and I'll work my way to that. Ok so anyway, I couldn't eat so I HAD to do what he said. I did 250cal a day. That is 1 can of Peptamin Jr. Yuck! After my stomach got 100ml I get so nauseated and vomit. It is awful. I am still doing that. I have been doing this for 3 weeks. I had to go to urgent care one day last week because I was severely dehydrated. I got my PCP to write me a presciption for IV fluids so I can go whenever I feel that light headed spaced out feeling.
So today I went to see the New GI, Dr. Koretsky in Melbourne. My friend told me that the wait was going to me super long so I brought a book from my Sunday school class hoping to get some chapters read. I sat down and read two sentences and my named was called. Wow! And the doctor came right in. We went over my medical history and my Gastroparesis history. I told him everything my previous GI did. He was shocked to think any GI would give a patient with GP a G-tube. So what he told me was that he has never done a G-J tube placement but he was going to get someone locally who could and he would call me in the morning. The plan is to get a G-J tube. If I can't get it soon (perferablly next week) then I will get a NJ tube till I can get the G-J tube. I really like this doctor and I think he is really helpful.
Ha I also went to urgent care Sunday. I thought I had fractured my hip. The doctor was more concerned with a hernia then my hip. After an x-ray it was confirmed that I had a hip strain. So I have to take a break from spinning, which I am super bummed about. I took this week off and might have to take next week off too.
Ok one more thing. I am going on Spring Retreat this weekend. It is 3 days. But I am super excited. There are I guess water sports and human foosball. I can't wait!
Love always, Kari