Two More Points Needed

I thought you might enjoy seeing Brianna with her friends. She loves to have fun and dress up for Halloween. (I wonder where she got that from?) Here she is with (from left) Chelsea, Nina, and Troy, oh, and our dog Winston. Brianna made her and Chelsea's space helmets from paper mache....imagine that. (For those of you who don't know, I use lots of paper mache in my art.) I miss her smiling face so much.

In my last post, the doctors talked about changing her to a conventional ventilator when the mean air pressure (MAP) was down to 24. After some more discussion, they decided it would be better to wait until it got down to 18. This morning we're at 20, so just a few more points to go. If it doesn't happen today, they will wait until Monday. There are a lot more people around during the week, even though the ICU is well-staffed 24/7.

They have been turning her usually every 24 hours from her stomach to her back and vice versa. She does better with her oxygenation and not so well with her CO2 when she's on her stomach, and then does better with her CO2 and okay with her oxygenation when she's on her back. So this morning while on her stomach for the past 2 days, her CO2 is higher, which affects the pH balance of her body.

Most of us are balanced, but some run alkaline or acidic. If CO2 is not released enough in your lungs it turns into acid. When too much builds up, it starts to damage the organs. Brianna is only slightly acidic and her body has made some adjustments to accomodate for the change in pH. So I will be much happier when she is turned onto her back.

We also had another patient care meeting yesterday that went well. We met with the attending ICU doctor, our bone marrow transplant doctor and nurse pratitioner, Lizzie, and our social worker, Darci. What was discussed was moving her to a conventional ventilator in order to get better diagnostic pictures of her right lung, ultimately to heal her completely.

The difficulty with Brianna's ventilation all stems from the original fungal infection in her right lung. It seems a portion of it has possibly died and now her body is forming scar tissue around it to protect the body from it. But her lung has a hole in it, which makes the pressure being used to ventilate her a little uncertain, or in other words, they're not sure how accurate the numbers are on the ventilator because air is escaping through the hole.

CT scans are needed to better see what is going on in her right lung. And she can't be moved for those scans until she's on a conventional ventilator. So next week, we're hoping that she can be weaned down to 18. They're going to let her rest a bit this weekend, which also makes sense to us. You make progress even when you rest.

Dr. Agarwal, our BMT doctor, asked how I was doing. I had a little bit of an emotional breakdown this morning, just because I miss my daughter. I know she is here, but I sit in her room and think I see her sitting up to say something. But this weekend is also Mother's Day. My dear parents offered to stay at the hospital in order for me to be home with Trevor and John. So we will most likely split our day on Sunday to be with Trevor and then be with Brianna. I thank God that I will be able to celebrate with her. And I know that every day Brianna continues to fight, is another day closer to her getting completely healed.

I also want to show my mother how much she means to me and how supportive she has been and continues to be. I wish you all a Happy Mother's Day. Enjoy the time you have with your children and your parents, because each day is a gift.

Oh, and for those of you who would like to see the pictures of my visit with my PFATTie friends, you can see them on Sandy's blog: www.samiamcreations.blogspot.com. Thank you Sandy.