Feeding tube frustrations at the hospital

Hello everyone,
So, I went to get my GJ tube button placed today, and they put a J tube in my GJ stoma!!!! Ir makde a huge mistake. They didn’t even give us an extension for the tube, so we can’t even do our meds!!!! Hoping this gets fixed this morning!!! So frustrated.
Ray

Wednesday morning update from Ray

Hello everyone, so I went to bed yesterday afternoon and slept until 10:57 PM. I then woke up and checked my feed bag and it was still going. I’m still waiting for it to finish so that I can change the bag. My pump keeps alarming and saying the feeding is complete, but it is not quite there yet. My homemaker is coming around 8 AM, but I really don’t have anything much else going on today. We might play our zombie game that we play on the computer, but not sure. We have therapy tomorrow, and we are looking forward to that. We called yesterday to schedule our tube change to get a button style tube that is more low profile instead of this dangler tube that is constantly getting in the way of everything. I’m waiting on interventional radiology to call me back with the date for the tube change hope everyone has a good day.

Ray

awkward

I’m at home, and I feel very awkward. Yesterday, the conversation was all about the restraunts people went to and how good the food was. I stayed out of the conversation. Then, they had my favorite meal from before I had my tube. It was lasagna with garlic bread. I just lay on the couch and pretended to be asleep. It was so hard. Just the smell alone was just…. But then, I thought of how sick the meal would make me, and yeah…. I’m fine when it’s one or two people eating in front of me, but when it’s a group, it’s overwhelmming… I also had to ask my little brother for help with pouring my formula into my bag, and I felt guilty doing it, because I thought I should be able to do this by myself!! I kinda felt like a failure… Then, my family told me my formula looked and smelled like baby formula and it looked and smelled disgusting. And I told them, well, it’s keeping me alive and left it at that.

Raych;

new diagnosis

I have to get an IV treatment every 6 months. I also have to take a liquid vitamin D suplement. Maybe Calcium as well. My doctor is also going to try and get me into home PT and she is going to try and see if my home nursing can be extended so my nurses can come once a week at least to help me look after my tube, as insurance only wants to approve them for 2 more weeks. Ugh!! I hate insurance.
I’m also being referred to an endocrinologist. I’m also getting my blood drawn this morning by my nurse.
Ray

tube feeding frustrations

Feeling frustrated. I was gaining weight, very but noweaI’m losing it again… My dietitian says that the 6 cartons of Vivonex 1.5 that I get a day should be enough to gain weight. If we have to increase it, I would have to increase my rate as I am already on 24 hour feeds. My GI had said that if I don’t gain weight in the next one to two months, I would have to go on TPN to get me over this initial hump. I hate this disease!

food the thing “i miss

You don’t realize how much food is a part of your life until you can no longer have it. I am thankful for my feeding tube, but I do miss food a lot! You would never know by looking at me that I have gastroparesis. I just want food!!

Ray

GI advice needed

Hello everyone,
I’m at Northwestern right now. I have a midline and an NJ tube. This is my second NJ tube. I’m not gaining weight on my feeding tube… My small bowel followthrough was normal. The primary care team, not GI said that my problems were most likely intermitent. How is it that I could have an abnormal gastric emptying test and a normal small bowel followthrough?
Also, I have EDS, and therefore, my vein access is crap. I have this midline, but they only last for 30 days. They said I could get the line replaced every 30 days. I told them this would cause my veins to scar more. They said I was to young for a central line and a permanent tube and that the risk of infection outweighed the benefits. I’m just confused. They also said that within a month, they hoped I wouldn’t need tube feedings anymore. I’ve tried all the meds I can try for GP and all the surgeries are considered experimental. My insurance won’t pay for them. I was 88 pounds when I came in here on Wednesday, and now I’m 85.3 pounds. I don’t feel like I’m being listened to. Any advice?

gifts from friends and medical stuff

So, we got a mini fridge from our friend Carol. We also got a connetics sand kit and a magnetic building kit from our friend Seneca. These were both surprises. Our friend Carol got us the mini fridge because it’s so hot in our room because we don’t have air conditioning in this part of our apartment. We can store our formula and IV fluids in there as well as our ice packs because this little fridge has a freezer compartment. Yay!!! Our nurse is coming tomorrow to do our IV infusion. Hope our blood pressure responds better tomorrow than it did the last time. The last time we did IV fluid infusions, our blood pressure was only 90/60 after 2 liters of fluids. Have a good night everyone!
Ray