Monday, October 17, 2016

Update 10-17-16

Well... SUPRISE! I had a tube change and now I am sick. I haven't been up to posting anything. I went down to Phx for an ultrasound last Wednesday... (All results were well. Celebrate that victory!) Then the following day I had a tube Change. I woke up with a cough (which can be normal and thought,  "Okay true"... But I remember thinking to myself, "but I have never woken up like this before." (And I've gone through many. My feeds are in half. But climbing back up slowly. Replacing the tube helped for sure because I'm not tasting meds and formula! (Idk if GI really checked placement since it was being pulled anyways...) he was busy... So idk (I don't like when I get told that by medical professionals. I was just going through the motions... Idk why the need to tell me that. I was waiting patiently. I had no complaints... I have a life too. I have an appointment.  I am paying for a service.) then by the time they wheeled me down stairs I started my famous Dry Heaving. So fifteen minutes later we got to call them and of course they only gave me half a dose of anti nausea! Those ones know better than to give me a half dose. Please folks! So that calmed things down. And about 30minutes post leaving the hospy I went to take Bentyl and my tube was upside down. (Now I have a low profile tube. That's where the problem Lies... You can not have it upside down because the tubing on the out side has a twisting locking mechanism. So they twists into place and lock. Well due to the
Upside down-ness the tube would not stay connected. Which is not only going to feed everything I own formula ... it would lead to putting me in danger if I were to be asleep and small intestine bile were to start coming out of my J tube. Those are vital!) so we called and I got to go back And my GI took his hand and twisted the stupid thing the right way and it hurt pretty good (it also repeatedly returned to upside down and I'm still making it not be upside down)  so I'm positive it was actually put in upside down... And I have always been preached to never ever twist a j tube! You mess it up inside! Well idk why this time that was okay to do.? We will see. They said it needed to be broken in like a shoe from being in the box...but we moved on with life and the next morning I woke up sicker than a dog. I had a big pots flare amd this stupid coughing and pain in my ribs (lung) and despite my best efforts all day I ended up in the ED all night long. And I didn't get good care. I am still sick with my lungs. Idk what is wrong PCP was too busy today to see me so i can go to the ER or I have appointment tomorrow... Yeah... This is what happens... Oh and a lot have asked  why I had the tube changed. And I haven't ever addressed that! You have to have them changed out every so often because they will get worn out and break. Plus for two weeks prior I wasn't  even managing a can of formula a day so something was off with the old tube... But yes they have to get changed. It was not for fun (wink wink) that's my update  lots of love and well wishes for all! My fever just got higher.  Tylenol won't break it... 4 days of this fever that will not break. I could use some prayers today for sure... This situation is breaking me. I can't manage to have medical care. I don't know what I am truly suppose to do any differently... It is really hard on me... It's a rough reality.... I have to call the shots without the medical knowledge. Doctors are putting it all in my lap. It's not my place to make these choices.... That's why I have them. But I can't find any of them the past 4 days -Chelle  
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