a better day....

Today was a better day than yesterday!  It is so good to report that because yesterday Kasi just felt yuck.  I wouldn't say that today is one of the best days she had, but it was better than yesterday.  Kasi's hemoglobin remains low so she is pale and tired.  She even noticed her coloring was "off".  Also, she is noticing that she is getting kind of bony.  I am not sure what she weighs today, but she doesn't have much to give anymore. 
We talked with the surgeon today, and Kasi always loves to hear from him, NOT. (she actually really likes him)  He is a great guy and very personable, but also very real when talking about what happened in the OR.  Kasi just said to him, "that's gross".  For me, very interesting as long as I don't put it with Kasi's body.  Sometimes I am able to do that, and at other times it hits me what she actually has gone through.  For your information and to put it very lightly, they basically had everything inside her body, out.  Not quite everything, but close.  Her lungs of course stayed in but they deflated the left lung, and the rest we won't talk about.  It is no surprise though that she has pancreatitus after talking to him.  Today he said he had to kind of fold it in half, at that point Kasi covered her face, and then he said to her, "what, it's kind of like a filet of fish and I had it folded in half".  We were laughing at Kasi, but when he left, Kasi said I will never look at fish the same. 
All of this to say we once again are going to wait on her angiogram, which was supposed to happen tomorrow, much to our surprise and now we are looking at sometime next week.  Her pancreas levels are too high yet to start food, but as soon as they drop below 100 we will start sips again.  If they go up, we stop and try again in a couple of days.  This will continue until we have success!  As of right now, nothing and nothing for a while.  Unless her levels drop suddenly, we will have patience in this process.  Kasi is doing amazing with the thought of no food for a while yet.  She doesn't like it, but she really doesn't like the pain and nausea that she feels.  It is over whelming at times and she just curls up in a ball on her bed and trys to sleep.  She does get some relief through meds, but not always.  That is why she will not push the issue of food.  She knows that it would hurt like crazy if her belly wasn't ready and she started eating. 
I know a lot of you read this and think it must be awful.  I want to tell you that God's grace is so big that we continue to smile up here and know that this is only for a time.  We know that we are here for a reason and we will rejoice in our journey because we know God is right here with us.  His glory was not left in the PICU, it is here among us now too.  He is working in her and around her.  We have had good talks and have shared bits of faith with lots of people.  God is good and I have shared that with many people, and the story continues up here.  New babies are coming in all the time with Congenital Heart Disease, something we have been a part of for a very long time.  It is all new to families and it is a hard reality to sink into, with no choice.  The choice comes with how we handle life's challenges, here in this room, we take one day at a time.  We know that God grace is sufficient and His mercy is new every morning. 
He will NEVER leave us.....