Thursday, December 2, 2010

I got a talking-to from SuperNurse this morning about waiting too long between updates. :) Sorry. Overall, Jameson is having a good week. His white count went up from 0.2(yes I wrote it wrong before) to 0.4. That is still low, but better. Fingers crossed that it keeps going up, up, up!
We haven't had any more really bloody stools and he seems to be having a more manageable time pooping. It still causes discomfort and pain, but not like it was before. Again, hopefully this trend continues and we are over the worst of it.
Our eye doctor was in this morning and said his eyes are doing well enough to only use drops and salves when he is really red or has discharge as opposed to lubing his eyes with a Vaseline substance every.two.hours.around.the.clock. J hates eye drops, so this is great news!
The rash is still here and looking angry. It has spread and it just looks like it hurts. They ran cultures but nothing has grown. It may be viral. It is worrisome to say the least and we all want it to go away.
We were able to go down a little more on the pentobarb and he is more alert every day. He is strong, too. Everyone is surprised at how strong he is considering how long he was inactive and how many sedation drugs he is still on. He needs wrist restraints now because he can lift the z-flo pillows right off the bed to get his hands free. I LOVE how feisty he is and can't wait for him to keep us even busier with his sass.

We are so thankful that our little guy is still fighting and maybe making progress. Being here all of the time is so hard. "Living" in the ICU is really hard. But leaving the hospital is harder. It is hard to leave J's room and sometimes it is even hard to let go of his hand. Especially when we see people walking down the hallway lost in tears and we know they are walking away for the last time. Walking away without their child. And we watch knowing that every day it is a miracle that we are not that family. And also knowing that any day we still could be that family. But not today, God willing. We have much uncertainty in our world. But one thing I am sure of, is that no matter happens, God will give us our daily bread.

I sit and I think about that. He never promises to give us leftovers, never an extra helping for that midnight snack. He certainly doesn't offer a Costco membership to get us through the month in one foul swoop. He says not to worry because He's got our back. No matter what, I know I can have reservations at the finest table in all of eternity anytime I need them and I will be served what I need and leave full. I can bring all of my fears and worries and anger and pain and tears that leave me empty inside and just leave them in the coat room. And when I leave I will be full. Full of love. Full of grace. Full of mercy, confidence, joy. But I have to go there each and every time and ask for that table for two and sit across from the date who paid the ultimate bill so I may satiate my hunger and leave full. And I know that every time I go to the table, no matter how hungry I am, no matter how long it has been since I was last there, He is enough. I will not leave hungry. I will not leave empty. I will not leave alone. No matter what. And today I sit in this room and I thank God for giving us our daily bread, for giving us the strength we need, for promising to be enough. No matter what.

No comments:

Post a Comment