Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Saturday, June 20, 2015

Day 10- 3 Steps Forward....

2 Steps Back. I knew I shouldn't get my hopes up yesterday. Today started very different than we had hoped. Elijah's left chest tube is not putting out any more fluids. We thought this was a good thing. We were wrong. The tube was clogged. They were able unclog the tube but nothing came out. Come to find out, Elijah has collected more fluid in his left lung and it is in an area that the chest tube can't access. Basically, this all means that the little guy will have to get yet another chest tube tomorrow. Ugh. Here we were thinking that the tubes would come out, and now we are getting an additional one. The additional fluid in his lung is substantial and has resulted in decreased sats. On the positive side, we have weaned off of all continuous IV meds. This means that he has a little more freedom to move, although not much considering the rest of the tubes and wires attached to him.

Noah has visited his brother virtually every day since Saturday. He has been such a trooper. However, he is starting to show signs of stress and he is beginning to unravel. Today he got into a little argument with another kid on the playground at CHLA. When he came up to tell us about it, he came unglued and couldn't stop crying. I held him and he sobbed that he just wanted me. He didn't want to let go. Ugh my heart broke all over again. My parents have taken great care of him during this past week, but nothing takes the place of mom and dad. Noah has gotten very little of our attention and he doesn't have the words to express his feelings. He is worried about Elijah. And to be truthful, I think he is a little scared. I am going home a little early tonight to be with him. It is so difficult because he needs me, but so does Elijah. I guess we are doing the best we can, and yet it never quite seems like enough.

1 comment:

  1. Hang in there my friend. You are loved and everything you are doing is exactly what you should be doing.