Taking One Day at A Time

Here's a great photo of Brianna and her friend Chelsea. They had so much fun together, especially when their friend Nina joined them. I will be so happy to see then all together again, one day soon.

Again, it's been several days since I've posted. Brianna stabilized Sunday afternoon and even improved. And, I was able to go home Sunday afternoon and evening, while my wonderful husband stayed with Brianna at the hospital. In fact, when I got back on Monday, he held down the fort at the hospital so well and Brianna made great improvements, the doctor said that I will have a hard time following in his footsteps. We laughed, but I was so relieved Brianna had made so much progress.

On Sunday, Trevor and I went to see the new Pirates movie. It was great fun, and I enjoy Johnny Depp so much - even Keith Richards makes an appearance! We went to an early dinner and then just relaxed at home watching TV. Of course, I did my laundry and grabbed several things to take back with me to the hotel. It was actually so nice to be home, but not long enough. I slept well in my own bed too. I thought about how Brianna was doing and just prayed her progress continued.

Monday morning, Trevor and I went to the mall to do a little shopping for him. He needed shoes and he asked if we could go. So we picked up a pair for him and I even found a pair. I did get teary eyed when I saw the Sanrio store in the mall. Brianna loves that store with all its Hello Kitty brand items for little girls. At Christmas I bought her the little contact case and a Happy Kitty that nods its head when the sun hits it. I was missing her again something fierce. We haven't heard her voice in almost six weeks, and I haven't felt her arms hugging me. She's there in bed I know, but it is still so very hard.

Later in the morning, it was time to head back to the hospital in time for all of us to go to lunch. I miss Trevor too. He is so tall and handsome and has such a great laugh. It was a great little reminder that life will be normal again, it will just take lots more time. John and I made the switch so he could get some things done at home and Brianna continued to do well. He and I are like two ships passing in the night, and I miss him terribly.

Then on Tuesday, we had another Care conference. The focus of this one was to determine whether Brianna should have surgery right away, or wait. After the surgeon looked at her CT scans, he met with the other doctors first. They called us into the meeting 30 minutes later. The BMT team, PICU team and Dr. Whyte the lung surgeon all agreed that we should wait maybe two to three months before Brianna undergo any further surgery. They made the point that she was just too week and the lungs needed more time to heal before surgery. As Dr. Whyte put it, its a risk/benefit thing, and right now it would be too risky.

I was relieved on one hand, because I know she would be too weak to handle it. That her lungs were still healing, and with another miracle, maybe she won't need it at all. But on the flip side, her chest tube drainage grew out aspergillus (something we learned only a day or so ago). And that scares me terribly. But as they all said, we know she has the fungal infection on the right side. So it's really no surprise, and as each day passes, Brianna's immune system - as new as it is - is able to send more of those neutrophils to the site and help in the fight.

John again came down for the meeting. I am so lucky to have him. He feels exactly as I do. Neither one of us will rest easy until that thing is out of her or we know it is completely gone.

As for her chest tube - which she still has some 7 weeks after her first surgery - it will stay in, but be switched out with a smaller, more comfortable one. The reason is she has a hole in her lung and the tube is allowing that air to escape out of her chest cavity. Until the hole heals or is surgically fixed, the tube has to remain, and it may mean keeping it until she has the second surgery.

The other bit of news we were given is that the quick test, or slide smear, of the bronchoscopy that showed fungal elements was not from the left lung. Somehow the lab got it mixed up and it is actually from the chest tube drainage. I was left with mixed emotions - relieved, but a little anxious. How could a mistake like that be made? Scary. All other tests from the left lung now are negative - no fungus, no bacteria, nothing.

John and I want the docs to be even more diligent about fighting this thing in her right lung. She is on the highest antifungal coverage one can get, and it seems that her body has responded. At this point, we've been able to keep the infection at bay. I pray very hard that it continues.

Brianna's progress over the past four days has surpassed the doctors expectations. She has come off the noriepinephrine and the dopamine for her blood pressure, they have reduced her diuretic IV drips because she was 2 liters negative just yesterday and even more the day before, and they have come down on the ventilator settings. She has even started sprinting. This is when they set the ventilator to give her only 6 breaths a minute for an hour. Brianna has to breathe more than that - we average about 15 to 20 a minute. It's a way to strengthen her muscles and see how she does. This is done four times during a 24 hour period, and then the next day or so they increase the time to two hours four times a day.

Her first sprint was great. She averaged 25 breaths and held her oxygen saturation at 99 percent. We were so pleased. The doctors even talked about extubation possibly in the coming week. But as always, they don't want us to get too excited. We have to take one day at a time and her kidneys are still under much duress.

Her creatnine hit a high of 2.6 (normal is 0.7 or 0.8) and her urea nitrogen (BUN) was 168 (normal is something less than 40 I think). This is a big sign that her body is having trouble clearing fluids through the kidneys. But over the past few days, the numbers have headed in the right direction. All have come down to yesterday's 2.2 creatnine and 144 BUN. But as long as these numbers remain this high, she is still in danger of her kidneys just stopping. Again, another prayer of ours is that the numbers keep coming down.

Our baby girl is getting better, but I am learning the hard way that we have to take one day at a time. She has had a good few days and my hope is that they continue.

Until we are home and Brianna is completely healed, I will continue to say thank you to all our friends new and old who send their love, prayers and good thoughts. Our family have been so supportive, and we really couldn't do this without them. Also, I want to acknowledge our dear friend Sharon Jones who heads Brianna's boosters. She kindly came to visit me on Tuesday. But every week, she works on finding volunteers to help our family. Thank you Sharon!

I had no idea how long this journey would be and I still have no idea how much more road we need to travel before Brianna comes home and is completely healed. Your thoughts and prayers and positive energy are still needed, because I have come to realize that the road ahead will have bumps. I just pray they are small compared to what we've had to travel in the past month and a half, on day 109 in the hospital.