Feeding tubes, Stomach suction, and Dehydration

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.

So I was released again on Saturday, July 2nd. But I am feeling much more optimistic this time. I was even able to go to the family 4th of July party yesterday and sneaked in a little rice too (teheheee) I sat in the sun, watched River swim for a few hours as we listened to classic rock. My uncle even went to the store and bought me a fuse banana colada (No - there is no alcohol in those) but I freeze 'em a little and they turn into a yummy slushy treat. They lit a few fireworks and then I went home and slept almost 14 hours (building my spoons back up!) It was a great day out, and hopefully the beginning of nice break from USC! I tell you, these last two months... they've been a real bummer. I was becoming very discouraged and started to wonder if I was even going to make it for another transplant. I just need to remember to take it 1 day at a time. It's kind of like when I clean my house (well when I used to) If I started thinking about everything I had to do I felt like you could see the smoke coming out of my head as the list in my mind was becoming longer and longer until I would just throw my hands up and say "I can't do all this" But after I was done freaking out, I would remember to just look at it section by section, and it became doable. Same with this... so these last few months have been filled with me dragging my purple puke bucket around in one hand, my I.V. pole in the other, and having mini nervous breakdowns, but like I said... I know it has only been a few days, but I feel different this time and hopefully I can keep it up and stay out of the darn hospital for a while!

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)