You got a good set of lungs lady!

You got a good set of lungs lady!

Written Oct 29, 2011 12:55pm by Amber Gannon Medina

Children's is so good at giving us updates, and yet I sometimes dread receiving a phone call from them. They gave John a call this morning (not me, because the darn hospital seems to drain my battery to the point of no return every time I am there) and let us know she will be (or is right now) going through another procedure to help her lungs and her edema.

Apparently what they think has been happening and what may be stalling her progress is that she is having fluid build up in her lungs. The buildup is causing her to work harder than she should be and not allowing her lungs to expand. Its interesting that we noticed yesterday that her breathing had become labored and that all of this was decided after we left. I feel so ignorant of all the things they need to do for her, but sometimes I can see we are becoming way more informed or aware of her needs than we realize.

So this morning, they will be adding another tube to help her lungs drain excess fluid. They will be able to do it in the room she has been staying in-its amazing that they can transform her room into a little sterile OR! She will then have ANOTHER tube. We were hoping by this point that she would be getting rid of tubes and lines, but are also optimistic that this may be the reason why she has been having such an unstable recovery. We hope that maybe she will head towards an upswing after this.

I am still curious why she is having this problem-the excess blood flow to the lungs....There had been talk-as I mentioned-about the stent being too big or the aortic arch narrowing. But Doctor Mitchell took a look at her yesterday (her surgeon) and said that any smaller sized stent would be too small and that her arch looked good. So for the time being, they are still trying to do most of her body's work for her-through the breathing tube and with medications-so that she is able to put all her energy into healing and getting used to her new circulatory system (Her body does it all differently-she has a new fangled system called the Norwood Circulatory System). 

Yesterday was somewhat promising and also very difficult because Mira seems to be waking up a bit as well. They've lowered her sedative a bit and a few things bothered her yesterday-enough so that she gave us the "I am going to try and cry but I can't because I have a tube down my throat" look. I have to admit it was heartbreaking for me. Her little eyebrows squinted, her lips formed an O and her wide open eyes seemed to look for me to help her. It happened twice when she got the hiccups (imagine having those with an open chest-OUCH!) and once when the nurse suctioned her out. Its just horrible to not be able to do anything for her but talk soothingly and stroke her cheek. I can't pick her up or hold her or rock her, and yet she is scared and possibly in pain....

The promising part of all this is that her personality is coming back a bit! We really missed "her"! And I had to remind myself that babies cry a lot. Normal newborns cry when they are scared or hungry or you name it. So at least Mira has some normal experiences she is going through! And I've heard a lot of mothers don't know how best to soothe their newborns at times-so I guess I am having a "normal" experience with that as well. Its still heartbreaking.

We will update you on how this new lil surgery goes. We are keeping our fingers crossed she gets through it with flying colors and that this is what she needed to continue to get better.