Thursday, May 19, 2011

The Bag Lady

Besides Sicki Ricki and Banana mama (you have to say banana the weird way for it to sound right) The Bag Lady is officially my newest AKA. These last two weeks, most of my time has been utilized untangling bags and tubes coming from every which way (not that I'm complaining, since it ate up a lot of  time that normally would have been spent just been sitting in my hospital bed)
I checked in on May 2nd - I knew I was coming in because the doctors and I had been discussing putting a feeding tube in for a while, but April was a big month for me (Rivers, Jasons, and my moms Birthdays, and the Donate Life Walk) so I told them it would have to wait until May (I'm sure my docs just looooooooove me. hehehe) They also had to do a few tests before the tubes were put in. Did you know that it takes about 90 minutes for one half of an egg to digest, and just a while longer for the rest to be completely out of your stomach? Well it does, unless you are me. When I went in for the 3 hour test (a 3 hour test - hehe, Gilligan's Island) to see how long my egg took digest... well, it didn't. That egg sat there the entire time, but did leave my tummy about 6 hours later -- when I threw it up. I guess since my liver isn't working well, my stomach figured it could slack off too. And this is the cause of most of my vomiting, why I'm mal-nourished (no matter how many boosts I drank) and why a lot of medications don't seem to work. Basically, everything stayed in my stomach until it fermented (that's nasty) or until after several meals, it was just to full and had to come out somehow. Needless to say, the feeding tube was necessary. The procedure was easy peasy and even though it is right smack dab in the middle of my tummy, it is not that painful. Getting regulated on feedings is another story. We tried 3 different formulas (for some reason the easiest to digest was the last one they tried) and luckily that 3rd one worked. Then we had to work on the amount, and so far I can only handle a small amount (40ML) an hour, which means that in order to get almost a full days amount of calories, I have to be on the feedings 24 hours a day -- I'm hoping I can build up tolerance so that I can cycle 12hrs on and 12hrs off, then I'd just hook up at night and wake up content and with a whole lot of energy! But for now I am fine with 24hrs, because it's better then barely having the energy to make it to the bathroom to puke. hehee. The feeding tube (J-tube) bypasses my stomach all together and goes straight into my small intestine, but there is also another tube (the G-tube) which goes into my stomach and sucks out anything that I drink, and the stuff that the stomach makes on its own.Which I love, even though it sounds just like when they suction the spit from your mouth at the dentist, but this is what keeps me from being nauseous (about 90% of the time) In Martha's words... this feeding tube -- It's a good thing!!
Anywho, after the G/J tubes were in, I started noticing that I was getting a bit bloated. I thought it was from the feedings and the doctors (even though I mentioned it) didn't seem to notice, that is until a few days later when I started looking about 5 months pregnant. An ultrasound was ordered, and I was sad to hear that I was developing some Ascites (which I haven't had since before my transplant) So the next morning I had a parasentesis, 2 1/2 liters were drained from my abdomen (that is 5 1/2lbs) and I felt a little better - a little lighter. The day after that, my doc reminded me that it had been a month since my last bili drain change, they might as well do it while I was still here. And I knew I wasn't going home that week. When they replaced that drain they noticed a second stricture on a biliary duct a little higher and deeper in the liver. Am I ever going home?? Another procedure was now scheduled to put in a second tube and bili bag. And this one they said would be a little more painful (well they use the word "sensitive", but that's a load of poo - it's pain) which made me nervous because I had woken up in pain and calling for Faith (my sedation nurse) during the last replacement... and that worry was for good reason, because I did in fact wake up several times crying for Faith when they started to put in the second drain, but as soon as they said they were going to stop the procedure because they couldn't possibly give me any more drugs, I begged them to continue -- the sooner this got done, the sooner I'd get home, but they still had a long way to go to finish and I was in to much pain. They were going to have to put me completely under with the good stuff. So I was sent back to my room and told they would do the procedure after the weekend... greaaaaaaaat. Meanwhile my tummy started to grow again, again the docs didn't notice until I looked about 8 months pregnant (popped out belly button and all). So uncomfortable. They decided to add another parasentesis to my Monday procedure (which ended up getting bumped to tuesday) So I waddled around the hospital for the next few days, to full feeling to even keep my feeding tube on. Tuesday finally came, and both procedures were completed with me in la la land. My second bili bag was in place , and this time they drained 5 1/2 liters of ascites (yup, that is 12 lbs) I now weight 115lbs - eat your heart out Richard Simmons, fastest weight loss program yet hehehe)
So, yesterday when the docs came in, besides the pain in my ribs from where they placed the 2nd drain, I felt much better then I have in a looong time. Even thought they told me that my MELD score right now is 22 - higher then it has ever been, and in other states would put me at the top of the Unos list. But when they were talking to me, I could see the little wheels spinning in their heads, and finally one of my surgeons looked at the other and said, "We should do another biopsy" That is when 5 year old Ricki came out. "But I thought I was going to go home tomorrow." I whined. Ok, they said, we will schedule it for today then. I wasn't sure my body could take going under one more time, but it did, and I didn't wake up one time during the procedure.
Wow, are you still with me here? So that was 7 procedures in 17 days, and I'm going home with 3 output drains, 1 feeding tube, and a few new medications... but at least I'm going home!! :) Ya Baby!!


Robyn said...

Yes I'm still with you honey! Wow.... and i think I had a bad day! I'm following you... I may not say much but I am. Always know that! You have inspired me so much! I thank God for bringing you into my life! Hang in there sweetie! (((gentle hugs)))

Robyn said...

Hey honey, I'm with you! And I just think I've had a bad day!!! I thank God he brought you into my life! You inspire me and so many i'm sure!!! I am following you and keeping up. I may not always say so, but i'm here! Always know, you are loved and cherised!!! (((gentle hugs)))

Anonymous said...

Ricki! I think about you constantly and on the days when I think I'm going to fall into a hole of depression I think about you fighting your fight! U give many people inspiration, and I hope that helps to keep you going. U are going to beat this! I know you are! Keep on trucking. U are so loved! SMOOCHES!