Monday

Today has not really been a great day. Ava's had some set backs and that is never fun. Her labs are essentially the same, which is always good. She needs to have her vent settings tweaked still. I have been bugging our nurse all day about it and he has been bugging the doctor. New shift = New approach. I hope we didn't set her back too far. Right now it looks like all this hulabaloo is because of what they are doing to her. I really hope that 's it. I guess I just want it to be that.



Ava had a busy day and she is wiped out. She had a lumbar puncture and an EEG. She's been uncomfortable and crying off and on today. She really just seems that she's had it with all the poking, prodding, Accuchecks, lactate draws. There was a point today where the Geneticist at CHOP ordered blood tests as a check and balance for her Lumbar Puncture labs. It was going to be a WHOLE LOT of blood (for you medical folks 10 cc's). I got on the phone and made them tell me what the top priority was and WHY they thought that it was necessary. I also made sure that they knew that we would have never allowed the LP if we knew that all those extra labs had to be drawn. Well, as it turned out, we suddenly only needed 2 cc's of blood. One value for 4 cc's was never even elevated in Ava and the other was drawn within the week (another 4 cc's). That one had to do with long term storage so why would it matter what the value is 5 days later?

When we got to the hospital I made it clear that we will not do things to Ava just because we have pens and can write an order. Ava is a unique patient and suddenly we want to find things out just to "know". I told the Geneticist that Ava will not have so many labs drawn that she requires a blood transfusion. I told them that we are now starting to do all the things to her that we did to Eric and I will not let her be tipped over the edge like he was pushed.

It is just so infuriating.

As a result of all today's events we decided that we wouldn't proceed with the muscle and skin biopsy tomorrow. Our Neurologist came to talk with us about it. He was very kind and completely understood our concerns and desires not to do it. As we were talking he was assessing Ava. He had already seen her in the AM. He noted that Ava was doing much better than she was this morning. He was actually impressed. He also thought that she could handle the biopsy, if we choose to proceed.

We prayed over Ava and feel that we should proceed. So we will.

The Attending in the PICU feels that we haven't found Ava's baseline yet and that she has lots of room to improve. She also feels like we will be there for a long time. She reported to us that the neurologist was actually surprised and impressed by how well Ava did tonight form his standpoint.

That seems to be how Ava rolls.

Ava has no seizure activity on her EEG so we are reducing her meds there. She has no metabolic changes on her MRI in her brain (Eric really didn't either). She has no lactic peaks on the MRS and no other findings at this time. And I just learned that glucose production is tied into lactate production if it's not working properly. I really need a diagram about that.


I do not know what to make of all these things. I feel torn. Ava needs us at her bedside to advocate for her. Emily, Alexa, and Elaina just plain need us. I have these 4 kids and I don't feel like I am Mommying them at all. We are needing to come up with a plan that will keep every one's best interests at heart.