Day +25: It's been a rough few days

We were so excited to see Brianna's white counts climbing and her ANC rising to 900. We thought only a few more days and she could have salads and fresh fruits and vegetables again. But as usual with this procedure, it's two steps forward one step back. In the last few days, it's felt like a giant leap back.

Brianna's white counts had reached 1.0, but slowly dipped back to .5 yesterday. John and Trevor were visiting and we thought it would be so great to go take a walk on the roof. However since her white count dropped, so did her ANC. She couldn't leave the room again. We were both disappointed. Her white count today is back to 0.6, and she is still not able to leave her room. But at least it is climbing again. We were warned this would happen, but on top of all that is happening it's so easy to get disheartened.

Next came more information about her lung infection. It's been up and down with how she feels and the amount of coughing she is doing. One of the doctors yesterday morning during rounds mentioned that she might have to have surgery to remove part of her lung. That was the first time this was mentioned and it frightened Brianna terribly not to mention me. He also said that instead of doing her incentive barometer breathing three times a day, she should be doing it 10 times an hour. Again that was the first time anyone told us that! It was so discouraging to hear. But Brianna was even more determined to use the breathing appartus.

The infectious disease doctor came in this morning to say that they hope to have the mold pinpointed by tomorrow to determine a more focused treatment. Right now she's on broad spectrum antifungals. What's so hard to accept is that only 10-15% of transplant patients get fungal infections. I'm left asking why this on top of everything else?

So Brianna's spirits were so low yesterday and mine weren't far behind. She feels like she is making no progress on expanding her lungs and for me, I am broken hearted that she has to endure all of this. It feels like it is all piling up. Add the fact that I think one of my teeth is absessed and the car we drove here died in the hospital parking lot, and it about sent me over the edge.

Then last night, one of the residents came in and said that they think Brianna has Syndrome of Inappropriate Anti-diuretic Hormone. In other words, even though her body is retaining water, her kidneys are spilling out electrolytes, protein and such as if she were dehyrated. So now she has to limit what she drinks to only 2 ounces of water an hour. This way they can regulate her water and sodium intake. We are in our first day of this restriction and she is doing fine for now. Her sodium levels in her blood and urine are holding. SIADH can be triggered by a lung infection and "hello" Brianna's poor body was prime for it. They've also added a wonderful little nugget of restrictions - potassium. She is allowed only 1 gram, or 1,000 mg, of potassium for the whole day! Try looking up the potassium content of foods and you'll find that this is a very difficult diet to follow - especially for a teenager.

So please continue to say prayers for us. Sharon, Sandy, Christy, Cory, Pam, Ingrid, Kitty, Jojo, Britt and Ann ~ your emails and comments mean the world to us. We have read them and cried, because they have come when we've been so low and needed encouragement. A big hug to all of you who have sent cards, letters and gifts - family and friends alike. They bring Brianna much joy. And to Brianna's Boosters who have helped us tremendously. We are so grateful to all of you who are helping us through this. We continue on and pray for a better turn in the road ahead.