"We cannot change the cards we are dealt, just how we play the hand." ~Randy Pausch

Tuesday, September 14, 2010

So Far So Good

We've had Anna at home for four nights now. Things are going really well. I think the hardest part of having a newborn is getting her on a regular schedule. We're lucky that the NICU nurses have Anna on a strict schedule. She eats every three hours and sleeps most other times. She still isn't crying much. She'll let us know if she needs something, but she's a really calm baby. A co-worker of mine said that her twins were small at birth and they didn't start crying for a couple of weeks after they were home. Something to look forward to, I suppose.

Tomorrow I get to have my fistula checked out, again. I guess they'll probably do an ultrasound to check the diameter of the vein going up my arm. If it looks good then hopefully they'll be able to use it soon. I'd love to get this catheter taking out of my shoulder.

The doctor also called yesterday to talk about my liver. I don't know if I mentioned it before, but I had an ultrasound of my abdomen as a prep for transplant. They found a slight laceration on my liver and I need to get that checked out. He said he's going to talk to another doctor to see how we should proceed. We will either do another ultrasound to see if it has healed itself or we'll do an MRI. I asked what could have caused it and he said "it just happens." Seriously, that's his explanation. It's just something that happens. I'm sure it might turn into something that will need to be treated, but for right now the doctor is clearly not too concerned. Until he's concerned, I will try not to worry.

We also discussed my weight and the time I'm running on dialysis. I'm eating VERY well right now and I'm gaining mass, so he's going to raise my weight a bit. I had been cramping and my blood pressure has been dropping and these are both signs of dehydration. That means they are trying to take off too much fluid. I asked him about the 4.5 hours I'm running since I only weight a buck-twenty-five. He said that "it's worth the investment." There is some number that is supposed to be 60% and mine isn't, so he thinks that it's a good idea. I just can't believe that the 300 pound men run for 3.5 hours and little tiny me has to go for 4.5 hours.

People keep asking when I can be treated at a center closer to home instead of at the hospital. I think that they still don't consider my condition to be "stable." And until I'm "stable" I'll remain here. I think that once we figure out my weight and time then I'll get to run in Delhi. That will ultimately save me a lot of time and I'm excited for that. Although, I'm starting to think that I'll really miss the nurses and techs here. Not the drive, though.


  1. when I had an ultrasound for my gallbladder they found a lesion on my liver. same explanation - said I may have been born with it. They said it was harmless.

  2. I love the photos! Alli looks so big next to little Anna. Will be praying about the liver, too. Got the whole Joy's House crew praying from Day 1! -(Aunt) Leah

  3. A laceration that just happens? That's weird...Hope the day comes sooner rather than later that you are stable enough to be dialyzed closer to home.