Weaning Continues and Anxiety Increases

Another picture that Brianna took of herself. I love all these little poses. This photo really made me think about my dad and how he teases Brianna by calling her Angelina Jolie. In this picture I can really see the resemblance.

Brianna continues to stay strong. She has been through so much, I cannot even imagine where she is getting her strength and courage. All I can say is your prayers are helping. She is now down to 15 on the mean airway pressure (MAP) and they have begun the process of weaning her off the nitric oxide. This gas allows the oxygen to bind to the red blood cells in the lungs, providing better oxygenation. She has been at 10 percent for a long time and they have weaned her down to one percent in the last two days. It is supposed to be one of the harder things to be weaned from.

She is holding her own, but is certainly not where she should be as far as her oxygen saturation. A small sensor on the tip of her finger measures the amount of oxygen getting to the extremeties. You and I would run about 97 or 98. At this point, she's at 91 and they've had to increase the amount of oxygen she's getting through the ventilatotor to 75 percent. Remember, anything over 60% for a length of time can be toxic to the lungs. So to say my anxiety level is high is an understatement.

Today is the first day since my cold began Saturday that I've been able to spend some time in her room without having to limit it to 10 minutes. I sit in the room and obsess over the numbers blinking on the monitor just above her bed. It's very easy to do when they stare you in the face in bright flourescent colors and beep with every beat of her heart, change of her blood pressure and change in her O2 saturation. I try not to obsess, and the only way I can really cope is by leaving and either sitting outside in the sun or on one of the couches in the waiting areas in the hospital hallways. Just getting busy helps too, like exercising her legs and flexing her feet so she won't lose too much range of motion in her limbs.

I also know it takes her some time to adjust to every little change on her ventilator settings. However, as long as she is in the ICU I'm going to have a hard time.

Last week, I met with another mother whose teenage son had a bone marrow transplant late last year and who had many complications. It's funny how she and I both shared similar experiences with certain residents and doctors - good and bad. It's also good to know that even though they were in the hospital for five months, he is now home, still having to take lots of medications, but getting better.

She was the one who asked about Brianna's transplant. Funny how that has taken a back seast now that she's in the ICU. So speaking of her bone marrow transplant, her white count today was 4.8, her hemoglobin was 11 and she's getting a unit of platelets a day because she's undergoing so much in the ICU.

We have another patient care meeting today and I'm going to mention a few things. Most importantly we want to know the plan even though it all depends on Brianna. Hopefully CT scans will be able to happen soon after she's on the conventional ventilator so we can see what's going on in her lungs.

Another reason for our anxiety is her medical insurance. Something we don't think about is the lifetime limit. For Brianna, it was $2 million and we thought that would easily cover her transplant. At this point the charges are more than $3 million, but of course that doesn't reflect the negotiated rates which are often half. So about two weeks ago I got a call from the hospital's financial counselor who said she's concerned we're going to max out the insurance benefit. She was right. We're getting it lined up, but it's one more stress that we all don't need.

Please continue your prayers for us and send us more healing thoughts. We still have a ways to go before she's off the ventiltor all together. And I won't feel comfortable until I know that her lungs are healed and she doesn't need it anymore. Actually, I won't feel comfortable until she's home with us, all this transplant stuff is behind us and she's living her life as a young adult.

Thank you for all your prayers and lovely emails. We need them so.