Using the "E" Word

Brianna and Trevor smiling brightly for their mom and her ever present camera at family events. I'm so glad I take lots of pictures!

Brianna continues to have good days. She did have a small fever, which again makes me concerned about what's going on. But the doctors have been "sprinting" her on the ventilator every day. In fact yesterday, she breathed "on her own" for nine hours and did great. They are giving her very minor support and she is doing fine. So yesterday morning they even started using the word extubate. My jaw dropped when the doctors talked to me after rounds Monday and said that today they would probably extubate tomorrow. I repeated, "Tomorrow??" I was stunned!

I didn't want to get my hopes up. I was actually thinking I'd be happy if it happened before the end of the week. It looks like that may be more realistic.

Even though Brianna is doing well with her lungs, her sedation is now an issue. In order for her to be extubated, she has to be able to follow their commands and cough. They remove the tube during a cough so the body doesn't clamp down on it and cause damage to the trachea. They weaned Brianna off much of her sedation, but she is still very groggy and unable to follow commands. They don't believe there is any reason she would have neurological damage. It just may take more time for the drugs to leave her system since her kidneys are still not functioning 100 percent.

She opens her eyes and stares. But when I ask her to look at me, it's as if she doesn't hear. Of course, this too makes me worry that something has gone wrong. But I know that the doctors are right and that she may need a few days to be more "awake." Who wants to be awake with a tube in their throat? Not only that, but for the past few days, she hasn't gotten enough total parental nutrition (TPN) - her gatorade looking IV food - so her body has been catabolic. It's using her muscle and fat stores for calories. This isn't good, because she doesn't have any stores or muscle. So she is extremely weak and they expect her to squeeze their hands.

On one side, I'm so elated they are talking about getting her off the ventilator, and her lungs are healing. On the other, she is so weak and medicated, they have said that if she doesn't start to "wake up" more in the next few days, they'll start to run tests to see if she has any brain or nerve damage. I'm sure you understand our anxiety level.

I did get a break again this weekend to help ease my stress level. My dear husband came to the hospital early Sunday morning so that I could meet up with my friends Colleen and Kitty and Shelly at the Alameda Point Antique Market by the Bay. Some 800 vendors are usually at the show. It's something I went to regularly before Brianna's diagnosis, and I use much of my finds in my art. So it was a nice retreat to do something "normal" and browse all the vintage and antique goodies. One of my favorite artists was there Wendy Addison. She always has great items. Of course, I'd see something funky or 70s and think of Brianna and how she loved pieces like that.

Also at the show, I saw Joanie, the mother of Trevor's best friend Kevin. She was there with two friends, one of whom said she recognized me from the blog. We hugged and cried and they said they were amazed at how well we are handling Brianna's illness. The truth is you just do, you have to for your child. There is no other option. I realized how I naive I was going into the transplant procedure. I really broke down when one of her friends said they were praying for us and they don't even know us! I am always so touched by those words from strangers.

Another friend of mine whose young 8-year-old daughter is ill was going to come visit. She couldn't because her daughter had a seizure from a new medication she started. She said she got a glimmer of what we face with Brianna. But she got more than a glimmer. When you fear for your child's life and well-being, time stops and nothing in the world matters than getting your child well.

We both have a long road ahead of us with our daughters recovery. But we are similar in many ways. We have much family and many friends to lean on when we feel we can't endure seeing our children suffer any longer, or when we lose sight of the little steps of progress being made toward their health. I thank God for my husband and son, my parents and the rest of my family who are there when we need them. I am also thankful for all my friends who I can turn to when I need support. And, I am so touched by the many people I do not know personally, who help our family with meals and driving, who pray for us and who send us healing thoughts everyday while our journey continues.