On Monday the first of July, around 9 pm I was giving a medication through my J-tube and suddenly was showered in the medication. Meaning my tube was clogged and due to have no place else to go the medicine shot out of the feed port in my extension while I tried to push it through the med port. Here's a picture showing which port it which.....
Now just imagine a liquid medication mixed with water rocketing out of the feed port with enough force not only to shower me but also end up on my ceiling. I called my mom to the kitchen and after cleaning it we did everything in our power to try and unclog my tube. We tried coke, warm to hot water, cold water, trying to push the liquids through, letting the liquids sit in the tube, aspirating the liquids in hopes of getting the clog to come out with them and NOTHING worked. So my mom called the on call IR doctor and we got an appointment for my tube to be changed at 9 am the next morning.
When we got there to have my tube changed I was greeted by a room full of familiar faces from my first two tube changes. They took me back used General anesthesia to make me sleep and changed my tube. When I woke up the Radiologist came in and told me and my mom that they had to changed the size of my tube from and 18 French to the bigger 22 French because the 18 French had flipped out of my intestines and was back into my stomach which is what caused it to clog, and that hopefully the 22 French wouldn't do the same thing because it was a bigger and heavier tube. We where satisfied with what we had been told and went home.
I was feeling pretty crummy Wednesday the day after my tube change so the doctor called in some pain killers to help ease the pain caused by the bigger tube, but by late afternoon we realized I was running a fever of 102. Now for me I run fevers at random with no other symptoms as a part of what ever is causing my stomach to not work. We ran pedialyte through my tube for 24 hours and just watched for more symptoms to show up but as we suspected none showed up. So we started running formula feeds around 7 pm and that's when we noticed I wasn't tolerating them too well, they where making me severely sick to my stomach so as per instruction of the on call radiologist we stopped feeds and where scheduled to go to the hospital Friday morning to check tube placement. Well over night we tried to hook up and vent my G-tube, which goes to my stomach and noticed it wasn't working at all.
When we got to the hospital on Friday morning they said that my tube wasn't out of place but that the tube would still need to be changed due to the not working G-tube. So once again the changed my tube and sent me home but seeing they didn't have and Mic-Key buttons in my sized the had to place a GJ PEG tube which is the type of tube I have issues with the balloons busting on but
we left with hopes that this time that wouldn't happen and we wouldn't be back in a few days.
A picture of me and Megan one of my favorite child life specialist at the hospital.
The week end went over without an issue but on Monday I had a trip to see my GI doctor, and lets just say that didn't turn out well. She refused to listen to us and didn't even do an exam on me so now we have to find a new GI doctor who will actually listen to out list of concerns and also keep looking for what is making me so sick.
On Tuesday night I was laying in bed and suddenly heard a rush of air as well I felt something leaking onto my stomach, needless to say the balloon on my peg tube broke and the pressure in my stomach blew the entire thing out causing me to have to shove an emergency G-tube into my stoma all by myself which can be quite mortifying. Once again my mom called the on call radiologist and had it set up for my tube to be replaced under general anesthesia the next day, and Once again I showed up to Interventional Radiology to find a room full of familiar faces waiting to meet me as I was their last patient of the day. My favorite child life specialist came in to see me and talk down my nerves before she escorted me back into the procedure room and talked to me and held my hand while I went under. They changed my tube an I woke up in recovery, talked and joked that we needed to stop meeting this way before they sent me home with a brand new tube and good wishes that I wouldn't have any issues with this new tube.
A picture of me and my favorite child life specialist right before we walked back to the procedure room on Wednesday.
Well now you see how hectic the last week or so has been I hope you understand my lack of updates and I hope that you had a good Forth of July weekend and that you week was much better than mine.
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