Baby Steps While Brianna Hangs On

I am sitting near the foot of my daughter's bed in the pediatric ICU watching her. Although they assure me she is "sleeping" peacefully, it does not look like it. Her chest is palpitating up and down extremely fast, approximately 600 times per minute. Her eyes don't see us, but they are not fully closed and she has a gel that acts as tears in them. You cannot imagine the number of tubes that are trailing to her body and connected to her. This time is very different than when we were in the ICU before. This time she needs the ventilator to breath - before it was used in the hopes of opening up her right lung more.

Brianna has been in the Pediatric ICU (PICU) since Monday, and so far they've made a little progress towards getting her oxygen requirements under control. As I mentioned earlier, she's on an oscillating ventilator that pumps 600 times per minute little puffs into her lungs to keep all the tiny air sacs open at all times. The issue is making sure that the CO2 in her system gets expelled correctly. If it builds up in the body it turns to acid, and that is detrimental to the organs. So the PICU doctors are pleased that they've been able to decrease the amount of oxygen she's getting. She was at 75%, which is toxic to the lungs. Anything below 60% is much more tolerable by the body.

They were ultimately able to wean her down to 59% oxygen and they've been slowly weaning her down from the ventilator. Her MAP number (a figure that is calculated from several numbers) was initially at 35. They've moved down to 31. When you're at 15 you can go to a conventional ventilator, when the MAP is at 7 or 8, you can be extubated. We've got a little ways to go.

They keep telling us that we're making baby steps in the right direction. I am okay with that. But I want giant leaps in the right direction. At this rate, she'll be in the ICU for weeks. This is so hard to handle. Among all the things I worry about, is her skin. She has a small abrasion on the side of her head where she was laying. Your body was not meant to lay in bed all day so sores on pressure points become an issue.

Of course, our biggest fears come with the diagnosis of what is attacking her left lung. So far, all the "quick" tests from the bronchoscopy have come up negative for bacteria, the five most common viruses and fungal. But the docs say that it will take seveal days for the cultures to grow. That's when the actually put a tiny piece of what they took from her lung into a petri dish and let it grow. If nothing grows, then she doesn't have that. If something grows...you get the idea.

At this point, she is negative for one virus, CMV, and it looks like it's negative on the bacterial. The worst diagnosis would be fungal, because she's been on three antifungals for weeks. If fungus can still grow with all those medicines in her body, then nothing can stop it.

The worry is that this may be viral and if so, there is really no medicine that can be given to fight it. We have to wait until Brianna's body can build up T-cells, or antibodies, to the virus. This could take weeks, if at all, because she is immune suppressed. Her T-cells are purposely being kept at a minimum to ward of graft-versus-host disease (GVHD).

The doctors also tell us that we may never know what caused this. There are two other diagnoses- idiosyncratic pneumonia syndrome (a form of GVHD) and alluvial hemorrage - but neither fits just right and the treatment means steroids. We've been off steroids for a while because they suppress the white count and neutriphils which fight the fungal infection in her right lung.

"Be happy with baby steps," we are told. We are positive and yet we're still holding our breath until all the cultures come back negative.

I am playing soothing music for Brianna, and we are talking to her. My mom and dad have come to read to her and call her their little "teeny bopper," a pet name my dad came up with long ago for her. We hold her hand, rub her arms and feet. Although she is on a paralytic medicine (so she doesn't move for the oscillating ventilator), pain medication and two meds to keep her sedated, we are told that she can hear us. I know she is still in the body I see laying on the bed, and so I told her about American Idol for the past two nights.

On the door leaving the room, I've taped the picture (above) of her smiling face while being licked in the ear by our dog Winston. Everyone loves it and comments what a great picture. I put it there to remind everyone who cares for her and comes in to check her that there is a bubbly teenage girl inside waiting to get out and live life to the fullest again. We just pray that her lungs heal soon and she can be on her way again to recovery.

I cannot tell you how much all your emails mean to us. They are beautiful and speak of lots of prayers from people all over the country. Thank you to everyone. This is such a tiring ordeal and your warmth and caring thoughts and prayers carry us far.