A couple months ago I had to have a feeding tube put in, because my body was not processing food the way it should. I was loosing weight and very sick just from eating and drinking simple foods. All a result of the cancer I have.
Now not every Neuroendocrine (Carcinoid) patient has the same journey because we all are as different as zebras with their stripes. The first procedure did not go smooth at all from the start. Just when they were trying to put in the tube the first one busted and I had to have a second procedure to have it replaced. Then when they were introducing formulas the tube did something they almost never do (I guess a one in 100,000 chance) it curled back up into my stomach, and I was throwing everything back up. They had to secure it in my lower intestines. After a few days they sent me home.
Now things were progressing fairly well. I was able to do it at home on my own. Of course I was still having difficulties keeping weight on and was loosing weight. Not too fast so at least my regular Dr. was not to concerned at this time. I was getting to a more normal weight and I sure did not mind either. This continued for a month or so and I think I lost another 20 pounds or so.
Then my tube stopped working it clogged over night. I woke up one morning to a puddle of formula next to me. I called my GI doctor and went back in to the hospital to have the tube replaced. Ended up it was knotted.
This is a picture we got from the doctor. It is from the inside of the knotted tube. Pretty wild.
Now this was something my doctor had never seen. I ended up staying several days as I had become very ill and dehydrated very quickly. When you depend on everything coming from a feeding tube you wear for 18 hours a day. When something goes wrong with it sometimes it takes a few days before you realize there is a problem. By that point you can become very sick very fast.
Like I said the doctors had not seen this before so another 1 in 1,000,000 chances I guess. This stay was a nightmare though. I had some really awful dr.s. In fact I had one close to my last day tell me he did not know why I was on a feeding tube or why I was getting so much pain medicine. He told me that evening that he cut me off. I spent that night in so much pain and did not see a nurse until the next morning. I then found out the doctor did not stop my meds at all. For this I am filing a formal complaint along with two others. So I really can not go into much detail. That however gives you a little detail into how bad that stay was.
That same stay our little blue car finally up and died. catastrophic engine failure. So now we are renting a car we really can not afford till we can get out van back on the road. It has been sitting at a friend’s house for 20 months on a non op because it was so expensive to drive around. Also because the fees and smog were so pricey now.
So I came out of the hospital on Wed. 2 days ago. I went to hook up to the pump to do my first feeding and sometime during the night the pump turned off and the tube clogged yet again.
Yes, I know this is getting old. So I called my GI again. Because of what happened the last stay I was going to wait till I heard from him. So I waited. He got back to me and said he could have me come in Friday. The day of our churches trunk -or-treat. This is PA’s Halloween as we do not go door to door with her because of her autism it is too over whelming. I asked if there was any way he could do the replacement and I could be home in time for the party? He was reluctant given my history, but figured out a way.
I went in early afternoon and had the procedure done with no sedation. Yes you heard me right.. NO sedation…. It was not fun and yes I did pass out once or twice, but I was home in time for the party. When we got home it was a mad dash to get ready. I got the back pack ready went to hook up the feeding tube so I could take it with me and I could not get it to work. OMGOSH!!! This was truly a nightmare.
So this is now my fourth tube and not even hours old and it not working. We got to the party and I spent the first 20 minutes on the phone trying to get ahold of my doctor again. Realizing he was gone for the weekend. So now we were planning on making another trip back to hospital after the party.(PA as a ghost princess.)
When we got home I decided to try one more time to get the tube to work. Just maybe it needed a little time? I tried a little coke because funny enough when you have a clogged feeding tube they try flushing it with coke to get it un clogged. It worked. I have spent most of the night keeping an eye on it, because I am a little afraid of it deciding to not work again. Also though because there is so much stress right now with the wedding so close now, the car that has now died and trying to get the van on the road. I am beyond stressed that I can not sleep.
Which really sucks. If ever we could use a miracle it’s now…..