Brianna Fights for her Life in Pediatric Intensive Care Unit

Our dear sweet daughter is back in the pediatric ICU fighting to breathe. It is so hard to see her in such critical condition. Please send your prayers and thoughts of healing.

Yesterday morning it was apparent Brianna was not getting better. Her breathing was worse, and she was so weak, she could barely sit up. The doctors said she needed to go to the ICU, have the bronchoscopy to determine what is attacking her lung and be intubated. I knew that it had to be done, because the medicines they were giving her weren't working.

Before all this happened, we had planned for my mom to come and spend the day with us at the hospital. I thank God she was there for me and that John soon followed from work. Brianna sat up on the edge of her bed and leaned sideways on me, then my mom sat down and she leaned on her. It was difficult for her to talk with all the pressure of oxygen being blown into her mouth and nose, but she told us that when she's well she wants to go to a spa and get a massage and have her nails done. She also asked if I had been crying and I said yes, that it was so hard to see her like this. That was true, but I was actually very afraid of what might happen.

I kept positive thoughts in my mind and said prayers all night, but she still wasn't better. I knew that the ICU was the next step. She was moved from the 2North transplant floor to the ICU yesterday afternoon and they decided to intubate her immediately. she was having a very tough time with the oxygen supply they provided on the short trip between units. We waited anxiously, and while we waited, we had to pack up our stuff again and move it out of the room and into my car. When we got back the doctors came out and told us she was stable and not feeling any pain associated with having the tube down her throat and into her lungs.

About 5:30 pm, she had the bronchoscopy. They put a tiny camera, or scope, down into her left lung and the doctor immediately saw that the fluid in her lung was actually blood. She is bleeding inside her lungs. So he said he cleaned it up and when into the right lung to the area with the fungal infection. He said that as he went into one of her bronchial tubes you can see that it's collapsed and breaks up easily, that there is most likely some dead tissue there. This is not surprising to us because of the aspergillus. He was able to get lots of samples and took the directly to the lab. It will take 24 to 48 hours before we know what is attacking her lungs. In the meantime, Brianna has to continue fighting in order to stay with us.

We got a hotel and after seeing her in the ICU, I just fell apart. I thought I could handle it because we had been in the ICU before, but you never get used to seeing your child so critical. We went to the hotel to get some much needed rest. My mom stayed the night so John could go home and get clothes for the next few days. It may be weeks, we realize, but we're praying that it's only a few days that she'll be so critical.

Last night I didn't get any phone calls, so I assumed Brianna was stable. So when I got to her room the next morning, I saw that she's on a different kind of ventilator. Her chest was being pumped super fast by an oscillating ventilator that pushes air into her lungs and extracts it so fast, it's like 600 breaths a minute. It is used to better oxygenate the body. Even though she was getting 100 percent oxygen, her body was showing that it was only absorbing 60 percent. That began to drop around midnight, so they switched her to this new ventilator. And in order to do that, she has to have an IV drip of a drug that paralyzes her. Every so often the nurse has to check her to ensure that she is totally paralyzed in order for her lungs to accept this the ventilation cycles.

Today's nurse said I assume they called you to tell you of this change, and of course I got no call. I had made sure they had my cell phone number and wrote it down on a card and taped it to her chart, and yet I still got no call. This I would deal with in our Patient Care Meeting scheduled for 11 am today.

So I asked about pain management and the nurse said that she is on her usual pain medicine and the only way to tell if she's beginning to feel pain is to watch her vitals. If her blood pressure begins to increase, and her heart rate begins to increase, then she's starting to "wake up" and feel pain. Then she's given more pain medicine.

I have no words to express how I feel, how sad we are that she is in this position and that the pulmonologist just stopped by to say the odds are not with her, but that it's up to the individual to determine who survives. This is the hardest thing we've ever done, mentally and physically. You start second guessing yourself and saying if only we had done this sooner, or gone to this hospital instead or pushed the doctors to do this or that quicker.

We are desperate to have our daughter back and on the road to recovery. I dream of the days when Brianna and I shopping together, when the family is together enjoying a fire in the backyard and laughing. And I dream of the days when we will be shopping in Paris on her Make-A-Wish trip. Sometimes I think this isn't real and just a nightmare. Then I wake up and realize this is all real.

Please pray for Brianna's health, meditate on it, and keep her in your thoughts. As I said, we are desperate to have her back.