Waiting, continued....

We are wiped out right now. Emotionally, physically, and mentally. We feel so torn. Be with Ava. Be with our other girls who we miss terribly. We got up early 2 days in a row so we could be at the hospital for this pending muscle biopsy. Because of this we missed the girls and haven't seen them since a brief visit on Sunday. Now they are all a little stuffy, drippy and gross. Which makes it especially hard to be away from them. (I must be exhausted I want to be around grumpy and drippy kids!)

It seems that the muscle biopsy will now happen tomorrow about lunch time. Today she kept getting bumped due to more critical needs. Totally understandable and expected. We are frustrated. Ava wasn't able to eat for 12 hours again today as we waited. I feel like feeding her is the only hope we have of getting her back to some level of functioning. I am so afraid that if we don't do something soon she will become too weak to recover.

Today Ava had to deal with moving all of her various tubes. All seemed to migrate. Her breathing tube was still in the wrong place. They moved it, taped it and it helped a little. The new Attending for the week thought it needed to be moved ever so slightly. Her lung was still "whited out". She did not enjoy this. She cried, silently with tears. It was so sad but encouraging at the same time. She was showing a little spunk. This new attending was really addressing the issue for Ava. She was given chest PT and Albuterol. These things really did help. By 4pm her lungs looked pretty good. I could hardly believe it. I never thought that she would be able to overcome that.

She just looks so tired. I keep waiting for her to bounce back. Instead she keeps having to overcome set backs. She's still persevering to what end remains to be seen. She is teaching me a lesson in tenacity.

She is a sweet baby. She is tougher than Allan or I could ever be. I am trying to hold on to the hope I have for her, but today it's waining. I'm just so sad. For so many reasons. The depth of its layers astound me. When I try to think about them or go down the "what if" road my breath is literally taken away. I am then pulled back in the moment and reminded to be still and Know. God is in the details and has the tomorrows taken care of. This is a hard lesson for someone who not only likes to plan ahead, but likes to have 3 scenarios planned out.

We are faced with some tough stuff. Some of the toughest out there. We are worried for Ava and having to face Eric head on. We wonder about the all too real possibility that Ava may not be a part of our lives for as long as we want her to be. We are concerned about the choices we are making and dread the potential of the ones we may have to make in the future.

When I am lost in these thoughts I am reminded that even though some doctors have written Ava off, God has not. He told me that it was time for Eric to go to Him. We have not heard that about Ava. I fear it. I realize that it's a possibility. But I don't KNOW it. I may someday, but not today.

I am hoping in the ebb and flow of our emotions we will find a peak and be able to recharge our batteries. I suspect playing with our bugs tomorrow before we go support Ava will do the trick.