Ebb and Flow

I sit her by Ava's bedside for the 11Th day in a row. It's encouraging to see that she was down on her vent settings and she looked significantly less swollen when we first got here. Since this morning they have been giving her a trial to see if they can pull the breathing tube. Depending on how she does the rumor is tomorrow that they would pull it.



Her protein level is normal and her urine cultures are too so it looks like her kidneys are doing OK and the transfusion was effective. That is an answer to prayer. All this information we asked the Fellow this morning and he said he'd get back to us. It wasn't until I finally got up the nerve to ask Ava's nurse about the labs did we find any of the information out. This frustrates me to no end. Doctor's and communication do not go hand in hand. I think it should be part of medical school training. That and how to give bad news.



Another testimony to how wonderful the medical system is popped up today. The attending came in and told us that CHOP just called. They have a bed for Ava if we want to transfer her there. When we were admitted 11 DAYS AGO they started a bed search at CHOP and we decided, with CHOP's geneticist that we didn't need to go. I have never heard of it taking 11 days for a transfer. Most length of stays are significantly UNDER 11 days anyway. We were like, 'way to go CHOP. Thanks for getting on that!'



I almost accepted the transfer just for a change of scenery. All the fish on the wallpaper boarder swim the same direction. I think they should embed a fish going the wrong way or other irregularities in the design to we can occupy ourselves. So far we've made up several games with her monitor. Now they are getting old. I was happily making prayer bracelets. Right now I am out of some supplies and I have to wait to get more. So for now, I blog. Allan naps. Two feet away is our daughter learning how to breath on her own. It's quiet which is good. She's not setting off any alarms.



Ava decided to keep her nurse company last night and was awake until 3AM. The little stinker!
I had a hunch that was going to happen since she started to open her eyes when we were leaving.


Ladybugs at home are all gross. I am praying that they don't need to go to the doctor and that they can kick the colds by themselves. So far we have Wheezy, Gloppy, and Stuffy. Sleepy is in the PICU, Happy is in Heaven with Jesus. Grumpy is typing and Bashful is napping. Yup now we are a Disney movie. At least they all live happily ever after at the end of those.

I am trying to sort out the feelings I've been having. It's complicated and all jumbled up. This time around is so different. I haven't figured out a good way to articulate it. Once I can I will. Right now I am just trying to plod through my emotional quagmire. I am feeling more angry, scared and sad. Feelings that I don't usually have for long are staying around. They feel uncomfortable. Like a pair of skinny jeans just out of the dryer after Thanksgiving dinner.

Ava did well with her four hour CPAP trial. She is now on minimal settings on her vent. Then they will do a couple 2 hour trials until they feel she is strong enough to keep it up.

This afternoon she was sucking on her tube and making loud sucking sounds when she did. She also smiled, with her eyes closed, at my friend who was visiting. It was sweet.