Pneumonia Causes Difficult Breathing, Machine Needed to Help

It's been a week since Brianna's breathing became labored and it has still not gotten better. The doctors think she somehow got a viral infection that may have turned into a bacterial infection. She had some high grade fevers early in the week and once they switched around her antibiotics, her body responded with no more fevers. However, the lung x-rays showed lots of fluid build up inside both lungs, which made her breathing very difficult.

She was able to use a nasal canella (sp?), and then a non-rebreather mask with 20% oxygen added. But on Wednesday, it became apparent that wasn't enough. That's when she had to go on a positive air pressure machine (BiPap) - one step away from being intibated. Brianna's lungs are expanded with positive air pressure, in the hopes of keeping those lower lobes open and the air passageways cleared. The air movement can help also dry out her lungs.

Breathing on one of these is very cumbersome and it makes Brianna very anxious. She says she doesn't know when to breathe. What she mostly says is, "I just want to be normal." It's so hard to see her on this machine and struggling to get comfortable. She has no mobility with it either because it's hooked up to the oxygen in the room. You can only go so far. You can hear the air being forced into her and see her chest rise with it. It's a blast of air and a hole on the front of the mask is constantly blowing air out in front of her. These blasts of air make her very cold.

Yesterdays x-ray showed some improvement in her lung, but by the end of the night she was having trouble again. The reason is she was very dehyrdated, which is what they wanted, but then by the end of the 24 hour period, she had almost a liter of extra fluid on her. And where did it go? Her lungs. You can also see it in her ankles, which are very swollen, and other places. But she is still a lot leaner than she was a few days ago.

Thankfully, she's had no fevers for the past day and a half, a good sign. This whole ordeal really tires her out. When you're laboring to breathe it takes a toll on your energy. She heaves her chest just sitting. So she sleeps a lot.

Our anxiety level is high, as you can imagine. In transplant, the docs tell me, the lungs come first when treating patients. As Brianna knows, the feeling of not being able to catch your breath is scary. Another reason for my nervousness (other than this whole situation) is that I feel as confident with what's being done with her chest tube suction. The tube drains to an enclosed collection system to avoid infection. But, no one seems to know much about the system and the suction level settings. Add the fact that she's on the BiPap with all this pressure being pumped into her lungs and it really complicates it.

The daytime, Monday through Friday doctors are confident, and really don't ask questions about it. If they have one, the contact the right person. But at night and on the weekends, we get all residents and nurses asking people in other departments about the settings and how much suction should it be on and what about the water level in the collection system and the amount of bubbling it makes, and so on. Then residents come in saying we need chest x-rays to make sure she doesn't have air leaking back into the lung from her chest tube. It's a horrible experience for Brianna and for me to manage and watch. Several times I've had to demand that they call our daytime nurse pratitioner before they do something and have requested they call the cardiovascular ICU doctor to come in to ensure everything is set up right. We've had the thoracic surgeons tell me one thing, nurses who've dealt with these tell us another thing and then the CV ICU docs tell us something else. And this is Stanford's children's hospital! It's our daughter's right lung they're fooling with here, and I want to feel like it's being taking care of with kidd gloves!

Brianna's white count is still good at 7.4, but her platelets and red blood cells still don't seem to have come in. Or at least if they have, it's so slight that it's hard to notice. The chicken pox virus is clearing, and they had switched her to the pill form of treatment. However, she got several more red dots yesterday which meant she had to go on the IV fluid type again. That's a lot of fluid to add - a lot of fluid means wetter lungs - thus difficulty breathing. This could be part of the problem with her lungs worsening last night, after a Saturday morning x-ray that showed the lungs clearing more. Two steps forward, one step back.

I continue to send postive thoughts to Brianna. At night, I lay on my bed only 6 feet from her and pray for healing and send thoughts of clear lungs. I am trying to be a lightening rod for good and healing. We take one day at a time, and I know we're turning a corner soon for her getting out of the hospital and on her way back to being a normal teenage girl. That's what I have to believe and it will come true.

At 7:30 pm, John picked up my dear friend Alissa from the airport earlier in the week and drove her to us here. She came from Memphis and visited me for the past several days. It was so nice having someone around during the day to talk to about the ups and downs of this. She used to be a nurse, so she is a very caring person and told me stories about how she'd help her patients get well. Mostly she listened, hugged me, helped me with Brianna and watched our typical day. She brought some beautiful gifts for Brianna and Michael, her son who is the same age as Brianna, gave her a card and bought Trevor a skateboarding t-shirt. Brianna asked her if we could visit her in Memphis - we used to live right across the street. She said she wants to sit by her pool in their beautiful backyard. Alissa of course invited us for anytime and for as long as we want. I have some amazing friends. We went to dinner several times and made a toast to the day when we all will be lounging by their pool and our only worry is what to have for lunch.