Friday, May 25, 2007
More Worries Over Bronchoscopy Results
Brianna and her friend Troy were enjoying a night out at the movies. She would love to see the next Pirates movie coming out, and will be upset to learn that Survivor and Amerian Idol have ended before she could see the finales. We have taped them for her, and I know she will be happy to see who won both.
Yesterday, we had a very anxious morning waiting for the docs to change her to a conventional ventilator. It was supposed to happen at 8 am, but as with most things here, hospital time isn't the same as real time. I found the attending PICU doctor and asked what time Brianna would be switched, since it was already 8:30 am. It was decided to make the change at 9:30 during Brianna's rounds time.
After waiting anxiously outside the PICU, the bone marrow team found us and said she did beautifully. They started her at higher pressures and lots of oxygen, and were able to wean her down quite quickly. It was so obvious she was ready for this change.
When my mom and I walked into her room, it was so peaceful and amazingly quiet - except for the constant, but reassuring beeping of her heart rate on the monitor. The oscillator was extremely loud. It was like having a small engine in the room with a very loud piston, pumping hard and fast. I couldn't believe that the conventional ventilator was on! I also thought it would sound like the heavy breathing Darth Vadar made in Star Wars. Not so. Brianna finally is able to get the rest she needs.
Several people, from the massage therapist to one of the nurses, commented on how much more comfortable Brianna seemed. She was breathing more naturally with the conventional ventilator, didn't have to be paralyzed and did not need as much extra sedation as before. With the osciallator, I don't know anyone who would like to have their chest constantly bouncing from 300 to 600 times a minute to breathe.
We were so pleased with her progress and how well she took to the new ventilator. As the day progressed, it was obvious they could wean her a bit more on the settings. Originally, they left the oscillator in her room just in case she didn't do well. By 1 pm, they knew she didn't need it, and the oscillator was removed.
Also, they decided to do the much-needed CT scans the next morning. They wanted to wait about 24 hours before putting her through that. Well that plan changed when they saw how much better she was doing as the day continued. So Brianna was taken to the CT scanner about 8 pm last night. We couldn't go with her so we went to grab something to eat. When we got back around 9 pm, Brianna was still gone. So we waited and finally heard them coming down the hall pushing Brianna's bed and all her equipment and her loaded IV pole.
The doctor said she did very well and actually got a little angry with them for moving her so much. Brianna gave them some raised eyebrows and grimaces, which told them she wasn't happy. They gave her a little more pain meds and sedation to help her through it. The nurse told us that the actual scan took about three minutes. It was the 45 minutes of preparation beforehand and the 45 minutes or more afterward to untangle lines that took so long.
We could see though that even though the bed was disheveled and her IVs needed to be organized, Brianna was doing really well. So we were content to leave about 9:30 pm and head for the hotel. I called John to let him know that things went well. Soon after was when the bomb was dropped.
About 10 pm, I received a call from Dr. Franzon, the attending PICU doc, that one of Brianna's "quick" tests came back positive from her bronchoscopy. The quick test is when they take some of the fluid they get from the lung, put it on a slide and look at the smear to see if they can identify any of the cells. The bronch was done on Wedsnesday and up to that point everything had been negative. Again, they were looking for bacteria, a virus or fungus. The call was to inform me they found fungal cells on the slide smear, but that they had to continue to grow out the culture to see what it would produce. These are from her "good" left lung.
To say that all the gains we had made that day were completely forgotten is an understatment. It was as if the day hadn't happened and I was punched in the stomach. How could there be fungal cells in the opposite lung when she's on all these high-powered antifungals? All the doctors felt sure what was affecting her lungs now couldn't be fungus. I fell apart after the call, and continue to feel that this is all surreal. So, we wait for the doctors to come speak to us after rounds this morning. And here I am AGAIN asking why can't we get a break?
When we walked into Brianna's room this morning, they had weaned her even more on the ventilator. She's down to 45 percent oxygen - room air is 20 percent - so we're a little closer. They were also able to come down on the pressure and the number of breaths per minute, and her oxygen saturation is hovering around 94. So that pleases me that she seems to be getting better. But from the sound of the preliminary test results, I just don't know what to expect.
John left work this morning and is here at the hospital to find out what is going on and what the docs are going to do about it. From everything we've learned, fungus is aggressive and loves to mangle lung tissue. We can't afford that now. My mom is still here lending support at the hospital. My dad and Trevor are waiting to hear from us. All night I kept waking up, thinking this was all a bad dream and not real. Then I'd realize where I was and that my daughter is still in ICU and may be facing another fungal infection.
Yesterday, Brianna received a beautiful package of vintage looking tags and note cards with images of Paris. It was signed so sweetly with hugs and kisses to her, but it was anonymous. Thank you our secret angel. They are beautiful, with strking ribbons, pretty papers, sparkling crystals and lots of images of the Eiffel Tower. Getting to Paris with Brianna and our family was beginning to be very real for me, especially with the progress made yesterday. Seeing her extubated and on 2 North in the next two weeks was looking like a real possibility. But now my mind is cloudy again.
We are all remaining positive, but my anxeity has heightened ten-fold. We wait for the doctors to determine how real this new threat is to her lungs and to reveal their plans for getting her better. Or, better yet, to hear that this was a false positive and that nothing will grow in the culture. The CT scans of her lungs will give them more clues as to what is really going on in her lungs. No matter, it's obvious there is a real battle going on within Brianna and we continue to pray that she has the strength to stand her ground and fight.