Harvesting Joy

Yesterday Jameson slept away the day. Everything was great except that he was fluid positive. Hubs and I have been very concerned about keeping him even or negative every day; the fluid has to go somewhere and his abdomen is already really full of bowels and liver, so that leans towards fluid going into the lungs. His breathing volumes are down already today so SuperDoc is ordering a chest xray to see if that shows anything. We also realized this morning that he wasn't getting the correct amount of bumex over the past few days and that is one reason he has been fluid positive. We are so frustrated that our child has gained over 5 extra pounds of fluid on his tiny body in the past two days because the pump wasn't running at the correct rate. SuperDoc upped the bumex and hopefully it will come off soon. Fixable, but also totally avoidable. Grrrr.
On the liver front I need to pretty much retract my entire last post except for the edited part that it could be something different. SuperDoc, hematology, and a liver specialist from a different hospital have all looked at his info and tests and none of them think hemochromatosis is a slam dunk at this point. They aren't sure what is going on, but since his liver function is fine and some of the other more worrisome labs are coming back fine, they all feel that we have the time to wait and watch for a while. But a liver biopsy is still in the back of their minds. So we wait.
A trach culture taken yesterday came back positive for gram positive cocci. He is on antibiotics and hopefully they will work quickly.
Today is day 100. Why is it that the round numbers always seem so momentous and heavy? We are so tired and weary from worry and stress and med school finals and this roller coaster of good days and bad days and not sleeping and it goes on and on and on. In the hospital, it is hard to keep track of time; hours and days are lost and jumbled together and sometimes it feels like this has all been just one really long, bad day. Other times it feels like it has been years and I find myself straining to remember what Jameson's voice sounds like, what it feels like to sleep in my own bed with my husband next to me, what laughter is. And I miss being barefoot and having a private shower and not feeling self-conscious if I wear my pajamas all day long. And I miss holding my baby and living out the simple happily-ever-after fairy tale life we had been living. I long for the way it used to be. 100 days is just a really long time to have everything backwards and up-side-down.