Sunday, June 24, 2012

...and we are still in the hospital

Just a short note... Still in the hospital. We are at two weeks now...ugh. Case is doing so much better! His personality is back and it's so good to see him laugh, smile, and to hear him babble. I can't go into detail, but things were pretty scary at times last week, and I can't tell you how many times we have heard something to the effect of "this is a really dangerous tumor." Okay, we got the idea.

Case still has the chest tube and it is still draining, but it's much less. He is now getting a formula fed into his stomach through an NG tube (nasal gastric - tube in his nose), and he is being weaned off the IV nutrition. He is also eating a bit by mouth...pretzels and the like. We are both mourning the fact that nursing is over. Breastmilk is 50% fat, which is way too high for his leaking lymph system. I was told that it would be about 1-2 months until I could nurse him again,and then it would be time for surgery #2 and then it would start all over again. So we decided it was over...sad.

I spent the day home with Graydon and when I came back several bald, patchy spots on Case's head were staring me in the face. His hair is EVERYWHERE. I itch with his hair all over my arms. When he lost it the first time he didn't have as much. Now he has a full head of hair to shed. The pictures don't show that he has so much hair, but that's because his hair is the same color as his skin. His pillow is covered in hair. He touches his head and comes away with a clump stuck to his little fingertips. I hate this.

I am really hoping that we get to have the chest tube removed Wed or Thurs, which means maybe going home this weekend. It would be lovely to spend a few days at home together before coming back the next Monday to start round 2 of chemo. Here's to hoping and praying!


  1. Lots of hugs to you! You are already going through so many things that are so emotionally draining and now nursing is stopping:( I know all of us mommies are heart broken for you. We will be praying that you can come home and at least spend a couple days....I can't believe he has to do this again so soon!!! We love you all, hang in there, you are so amazing!

  2. So much to bear! We love you, think of you, and pray for you all. I'm so glad Case is doing better and so sorry that it is starting again so soon. We are always rooting for you! XOXO