Tag Archives: Hospital stays

The feeding tube weirdness continues

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.

WP_20151026_16_14_33_Pro [224851]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.IMG_20151030_185126 [232925](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…..



No, I did not fall off the face of the earth.

Most of my friends and family know what has been happening since about September of last year. However those of you who may not know me so well I apologize if I just fell off the face of the earth. I have been having some major health struggles. I have been in and out of the hospital and had multiple surgeries.

I went into the hospital n October 26th of last year with simple stones in my bile duct. I say simple because for most people this would be taken care of with a simple ERCP surgery and then a day later you would be sent home. Well this being me it did not go so well. I ended up having 2 failed ERCP surgeries at one hospital over the course of a week. Then they transferred me to another hospital for a specialized ERCP with ultrasound. This was the beginning of a slew of mistakes and fumbles on the hospitals side.

After I got to the third ERCP surgery they noticed some fluid that had leaked out from my intestine and I was in a lot of pain. Normally doctors would monitor this situation for 24-36 hours before going in and doing more surgery just to see what might happen. After all it was not a huge amount of fluid that we were talking about. About 1:00am on Oct 30th a surgeon walks into my room after my poor husband who at this point had had maybe 4 hours sleep in a week had gone home to sleep. Says to me he is taking me into emergency surgery. I freaked out as he tells me if he does not go in now I will die.

I called my husband (he had just fallen asleep) told him what the doctor said and told him he had to come back NOW. He then in turn called my mom whom I had not been speaking to for a while (mostly over stupid stuff, but that it another story). My husband gets to the hospital just as they are wheeling me into surgery so he has no chance to talk to the surgeon to tell him he does not approve. I was so drugged I was in no way able to make any decisions.

I guess my mom showed up a little bit later sure she had made it too late and I was already gone (passed away). On the way to the hospital she had an overwhelming feeling she had lost me. As it turns out I did code on the table, but I came out of it. This happens in every surgery my blood pressure drops to nothing & my heart will stop (because of the carcinoid syndrome). Of course it is a little more complicated than that but that is the gist of it. I did come out of it ok. They ended up having to open me up from sternum to just below my belly button. I use the term “had to” loosely because as it turns out it was not needed.

I was in ICU for 36 hours then put into my own room. I think I was sent home a week later with a fever mind you. Over the weekend at home I get very ill again & less than 3 days later was back in the hospital with a 10.8cm abscess. I spent the next week again in the hospital and then sent home a week later with 2 drains this time to drain the infection from the abscess. This was just in time for Thanksgiving. We spent Thanksgiving at my sister’s house and had a wonderful time.

I think it was a week after than when I started to have problems yet again. This time food was not staying down was loosing more weight (I had already lost 30 pounds the previous 2 months). Found out they had damaged my pancreas & duodenum during surgery to the point where my new surgeon was skeptical if I would be able to function with out yet another surgery. Problem being this time was I was not strong enough to survive another surgery at that time. So my only option was for them to put in what is called a PICC line (like an IV only directly into an artery next to the heart) and gives me what is called TPN (IV nutrition). In other words I could have nothing by mouth except sips of water & medicine.

That was 6 weeks ago…. I am still on TPN with nothing by mouth because my body has not healed. Right now I am in a holding pattern. I watch my family eat meals, which really sucks. I want to eat. Everything smells wonderful looks wonderful yet it is all hands off. My surgeon and doctors are still unsure how well I will do if they go in and do the surgery that is going to need to be done. Let alone survive it. The after effects of this surgery are kind of scary as well. It is a very involved major surgery. They are not even sure which surgery I will need. I do know I will be in the hospital for a minimum of 14 days.

I have to say my husband has been a saint in all of this. I have not been able to do anything in several months. He has had to not only take care of the house and PA, but he has had to play nurse for me. I have to say he is darn good at it all. He has the preparation of the TPN and the changing of the tubing and everything down to a science. He is so good he flushes the ports for me with the saline and is so gentle and loving about it all. I am very lucky to have someone who is willing to do so much and make sure I am taken care of.

I wish I could say this was all over now and everything would be fine. However right now we are smack dab in the middle of it all. With so much still up in the air and the fact the doctors can not make up their minds I am having a hard time keeping it all together. I can honestly say this is one of the hardest things I have ever been through.

I am still around & fighting.

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer

This is during my last hospital stay. The gown I am wearing was a gift from my good friend @LaurieMit and the zebra stripe is the ribbon for Carcinoid Cancer