More News and A Rough Couple of Days

Much has happened in the past couple of days. Every day I spend here seems like months. Sometimes I have a hard time seeing past the door of her ICU room, so I thought a picture of the Eiffel Tower would be a great reminder for me, along with all of your wonderful comments. We WILL be going to Paris, and Brianna will be the Parisian Princess while we're there, thanks to Make-A-Wish.

Friday, we spoke with the doctors about the phone call I had received about the fungal infection. They believe it was a contaminated sample, because we know she has a fungal infection in the right lung and the bronchoscopy brush that was done was not a protected one. In other words, the little brush passed through the area of the lungs shared by both, so if any particles of fungus was there from the right lung, the scope would pass through it. It still scares the heck out of me.

Also, Dr. Cornfield, the pulmonologist following us and the attending PICU doctor this week (thank God), said he was not surprised that fungus had been found in her lung. He said we know she has it and we're treating it. He said he had to break through a big blob of something when he went down with the scope and then when he came back up it was gone- probably blown down into her lung with the pressure of the ventilator. So it could have been from that. Plus, we can't tell on the slide smears if it's active or dead fungal cells.

When he looked at the CT scan of her lungs, he said he was pleasantly surprised how good they look. Yes, there were some areas of dead tissue on the right side, and some infection on the right, but overall they looked pretty good for sick lungs. He said the new infection on the left didn't look like fungus, but more like a bacterial infection. Of course, the radiologist would have to tell us for certain. (They have to qualify everything.) Well, bacteria was confirmed.

One of her cultures from the chest tube drainage came back with an antibiotic resistent bacteria - Enterococcus. This is usually found in the intestines. When kids are in the hospital on antiobiotics for so long, this bacteria is being brewed to be resistent. And when it starts to emerge from the intestine and get into the blood stream or other area of the body weakened by previous infection, it sets up shop.

So without waiting for a postive culture, the doctors felt that it was time to try the big guns on the antiobiotics. So Friday, they gave her Linezolid, which kills antiobiotic resistent bacteria. After that, all Hell broke loose in her body.

A couples hours after the new antibiotic, they had given Brianna some Tylenol for a mild fever - actually it wasn't one, but they thought it would make her comfortable. Soon her temperature rose to 39 celcius (over 100) and she was burning up. Her blood pressure started to drop and she had to be put on Dopamine - which makes her heart race and blood pressure rise. That made her heart race to about 149 beats per minute, but her blood pressure still was not holding. It was running about 80/40 - low.

And so they decided to give Norepinephrine. Then her ventilator settings had to increased quite a bit, because her oxygen saturation kept falling. A little later, her temperature rose to 39.9 Cel, which is almost 104. They had to bring in a cooling blanket. Later in the night, her body temperature plummeted and they had to bring in a machine that supplies continuous warmth to a water blanket/mattress. My sweet girl had a really rough 24 hours.


What was happening was that once the antibiotic was given, it killed the bacteria. When the cells were obliterated, the toxins in the bacteria were let loose in her system causing all sorts of havoc. It's called a bacteria shower, and the doctor said it was sepsis.

If we were septic, we'd be pretty sick, maybe even hospitalized. But with Brianna, being immune suppressed, it was serious. I was an emotional wreck, even though the doctors told us that she would get worse before she got better. It's one thing to hear it, quite another to live it. John knew this was really rough for me and came and stayed with me.

Yesterday, we arrived to see that she was pretty stable. Dr. Cho is on this weekend for BMT. He is just not very good at being compassionate. Dr. Cornfield has taken a liking to us and has followed Brianna for the past two months. So he hugs me and takes his time to make me feel okay about her condition, however serious it may be. Also, he is so positive about getting her out of the ICU in the next few weeks.

So Dr. Cho's first report to us yesterday morning that multi-organ failure was in process with Brianna. He spent about 10 minutes with us basically saying nothing to us, except clarifying the term multi-organ failure. This is condition is what leads to death most of the time.

So after I cried for a while, we went to see the PICU team led by Dr. Cornfield. He told us she is no where near that kind of organ failure. I knew it wasn't as bad as Cho had described. We came away later feeling a little better, even though Brianna was truly very sick.

Late yesterday, we learned that a culture from the chest tube drainage grew the antibiotic resistent bacteria Enterocauccous. They also found Staph in her yellow leumen of her tunneled central line. So to say that we've had a heck of a time for the past two days is an understatement.

Thankfully, Brianna has had a pretty stable day today. The doctors have told us that we will most likely have to face another crisis before this very long journey is over. It may be her strained kidneys, because they are barely holding on. They have been pushed to the limit. So far, they continue to function and we are thankful for that.

Our hope and prayer is that we've seen the last of this nasty bacterial bug, and Brianna can continue to be weaned from the ventilator.