One Day at a Time

Today Ava got a PICC line for better access. She is still on the bicarb and will now be fed. She will get a dose of bicarb to help get her lactate down. She had an Echocardiagram to see if there were any changes in her heart function. There were none. Tomorrow she will have an MRI to see if there are any metabolic changes in her brain. She will also have a nephrology consult to see how her kidneys are doing.

Through all this, Ava was sleeping peacefully. She was sedated for her PICC line placement so she was comfortable through out the rest of the time we were with her at the hospital. And of course she was sucking on her tube.

The geneticist at CHOP does not think that we would have any better outcome if Ava were transferred there. Which is a relief, since we didn't want to go that far from home. So we will stay at AI. Glenda the Good Doctor will go off service tomorrow, but she offered to remain our point of contact if we needed her to be. The next doctor coming on has been very compassionate with us. Hopefully that will go well. We seem to have a few old hurts from Eric with him. This is when I need to exercise some forgiveness.

We so appreciate how she is investigating every avenue she can for Ava, knowing it's what we don't want it to be. She is also trying to get as much information for us so we can make an informed decision. We of course thought we were doing all that before with all the testing and it all came up normal or it's not back yet. That's all pretty frustrating.

The most exciting news of the day is that because I threw a temper tantrum, and cried, I was able to hold Ava for a while. All I can comment on that is that it was and still is extremely emotional for me. I feel a little drained.

We don't know what the future holds for our beautiful baby girl. Nor do we know how much of a future she has. We continue to let God guide us, even when we feel like we are being led down a road we so don't want to go down.