Frustration, doesn't even explain it

Today was a fairly relaxed day. Ava was moving a little tiny bit more than she has been. She was not really that awake, but would still try and respond to us when we kissed her. She was a little uncomfortable and would cry. We think that she had some gas. She needed her tubes to be re taped as well. She was all done with the futzing around. Then she had a little PT/a massage. Ava really enjoys her hands and fingers to be massaged the most. She really just speaks with her eyebrows even with her eyes closed.

She was still on IV fluids and getting fed as well. The feeds were stopped for her MRI, so they were keeping her on IV fluid for that. She should just be on feeds by tomorrow. Ava's lactate is down and she will stay on the BiCarb for now. Ava's chest x-ray yesterday showed significant improvement in regard to her pneumonia. This mornings x-ray showed some more improvement. There is still some concern in her right upper lobe.

Allan and I enjoyed a nice, quiet day at Ava's bedside, waiting or her MRI. This was scheduled for 4pm. They actually took her early. We won't know the results until at least tomorrow. While Ava was at her MRI the Attending came to speak with us. We are sad that Glenda the Good doctor is going off service, but hope that the new Attending will continue to advocate for Ava.

One of the things that we learned tonight was in reference to Ava's muscle biopsy. This is a complicated story but for all intents and purposes the bottom line is that AI's lab mislabeled Ava's sample with Eric's name and requested a gene test for the sample. It was not run and the sample is at the Baylor lab. There is some craziness having to do with needing to send the sample back to AI. Then the sample would have to be resent to Baylor. We don't know why that would have to happen. We don't know if the sample would still be intact. We certainly don't know who screwed up and why. What we do know is that the studies that should have been completed by next week, haven't even been started yet.

To sum up, what still is pending for Ava? Urine Organic Acid studies, CSF studies, and three studies for her muscle biopsy. For Eric's DNA we are waiting on his POLG1 sequencing to see if there is a mutation there. (We don't expect to see that, but we privately paid for it and they should complete the study. We've been told for WEEKS that it would be done by Friday). I am beginning to feel like waiting for these results is like waiting for Godot. (He just never comes).

The hope is that all of the pending information would become useful in deciding what would be in Ava's best interest. One thing we know for sure is that Ava is responding to the treatment that she is being given and she is responding as well as can be expected. She is also responding faster than the doctor could have anticipated. This is a testimony to all of the prayer that has been said on Ava's behalf. PLEASE DON'T STOP. Let's ask God for a miracle of healing, for the atalectisis in Ava's lungs to clear up and STAY AWAY, for Ava to become strong and improve in her tone.

We also need prayer. We need to make a decision for our daughter's life with seemingly little to no useful information back. We are at the cusp of life and death and we are asking for wisdom in making choices for Ava. We are asking that God make it abundantly clear as to what HIS plan is for our daughter. We don't want to make a choice for us, but for Ava. This must be in line with the will of God.

One notion that has been present in my mind is that we don't need anything except God. We are living a life that is not ours. We have no control of the life we have. We aren't primarily caring for our home, our children, our jobs are on hold. Yet every need we have seen or unforeseen is being met. The "answers" we are looking for are lost, out, delayed. No doctor actually knows what the whole story is. Ava's Geneticist and her assistant are confused. They are talking to top metabolic doctors across the country and they have not much to weigh in with. When Ava did not do well on her hearing test I told Allan that there is no one who will be able to help us. Right now it sure feels that way. The resounding thought is that God is telling me that all we need is Him. We have to trust Him. So we do. So we will. We will wait upon the Lord. We can not make a decision until He reveals to us His plan for our beautiful baby's life. She, like all of our children, are on loan to us. We are here on this earth to do the work of God's will for us. No matter how scary or inconvenient a path we walk. If we walk it with God as our guide it is right. We are learning, daily, hourly to walk by faith and not by sight.