Ok, so I knew that life after getting the feeding tube wasn't going to be A-OK right away, but I was expecting to feel a lot better... I am starting to realize that things do NOT happen as quickly as I expect. :( I know it has been a while since I have really updated anyone on what has been going on, and I would looooove to say that I have been out living it up, but, I haven't. Though now, almost 2 months after placing the G and J tubes, I think we finally have it figured out... Normally I don't like to place blame, but this time I have to admit that I am a little peeved at my Docs. From the very beginning of my feeding tube, I had asked them several times, "Is this enough water for my daily needs?" It just didn't seem like enough to me, but they assured me that it was. I was sent home in mid May, and after a few days I started to notice that I was throwing up daily and getting weaker and weaker. Honestly, about 4 or 5 days after being released I should have called and went back in... but I am a stubborn one (sometimes) and a baby, and I just didn't wanna!! I wanted to wait until my clinic appointment the next week (don't judge me) which I did, and of course was admitted. It took quite a few days to get my electrolytes balanced back out and re-hydrated. But what caused the throwing up in the first place?? A few tests, (another endoscope) but nothing showed unusual. So another week in the hospital and I was released feeling pretty good again. But again after a few days I began throwing up and feeling weak, and again decided to just wait until my next clinic appointment to be admitted again. Again they had no idea why I was vomiting (it should have just been coming out of my G-tube), the feeding tube and venting tube were in the correct spots so it was a mystery. One thing different this time though was I spoke to the dietitian and was told that I should be pushing about 300 mls extra down my J tube to keep me from being dehydrated. Hmmm... that's interesting. Meanwhile my weight was continuing to drop, I was about 108. Again I was sent home... again I was admitted about a week later. This time they decided that because I was loosing to much weight, my formula needed to be changed to a less concentrated formula with higher protein and more calories. (I prayed real hard my tummy would handle it) And it did. Yaeeh! Now I needed about 500 to 600 mls extra pushed through my J tube daily. You are probably really sick of hearing this by now, I'm sick of writing it... but again, I was sent home, weighing 101 lbs. And no joke, (almost 2 weeks I lasted this time) but I was admitted again, and finally they added Potassium to my list of medications (since it had been low every time I was admitted - this time it was so low they had to keep the heart monitors on me for the first few days - the worlds hardest crap to get off your skin after - anyways, they also FINALLY decided that besides the 500 ml that I need in addition to my formula, I also need to make up what I lose through my bili drains (Billy and Billi Jean are their names. hahaha! I have to find ways to entertain myself - like I said before, don't judge me. hehe.) --It does make sense to me, and irritated me greatly that they didn't think of it before.
I hope you are all enjoying this beautiful holiday weekend!! I can't wait to be free from all these bags, poles, and machines. Actually, I can't wait to be free from this disease!! But that is something that is really taking a lot longer then I had hoped... Thanks for reading these novels, and if you have any questions feel free to ask, believe it or not I do leave out a lot of information, but it is only for length reasons - I can't even stand all this babbling sometimes. Hehehe. I hope you are all doing great, and if not, just remember to take it one day at a time - "just keep swimming" and that it will always get better - "It can't rain all the time" ...(I hope)