December 2, 2005

It seems each time I blog that Leah seems to be getting a bit better, her fever spikes again. That was the case right after I posted a blog last night. And during the night her fever reached 103. When they give her Tylenol it goes down and then rises after that wears off. That has been the case much of the day. At first this morning it appeared that Leah felt somewhat better. She

asked for breakfast, and though she does not eat a lot, she is eating. By midmorning it was obvious she did not feel well, and her fever was going up again. In order to take the blood draws the labs needed, Leah had to wait to get Tylenol for quite a while. Her fever reached 103 again. With Tylenol it went down considerably for the afternoon, and we were happy that she was able to be up to use the bathroom, eat a bit of pizza for lunch and sit up and act more like her normal self for part of the afternoon. Now she is running a fever again, and is back on Tylenol. No one really seems to have an answer as to why this is happening. They have almost entirely ruled out post-operative fever as a reason. They have also run lab after lab, and while her white blood cell count is slightly elevated indicating an infection, no real source is known. This is frustrating, yet in some ways it is good news, too. The major infections that she could possibly have are not showing up in the lab work, so it is possible Leah has caught some bug and is just not feeling well for no explainable reason.

Last evening Chris, Suzanne, Leah and I had the pleasure of meeting a young boy, Clayton. He was diagnosed with leukemia last year when he was four. After visiting with his mom for a bit in the lounge and discussing how withdrawn Leah is, Clayton came right into our room, took his shirt off, and proceeded to tell Leah all about his port and how it works. He reassured her it does not hurt and then today before he went home showed her how it looked after they had removed the needle. What a great helper! Leah was not thrilled with this bit of education, but we are grateful for Clayton and his helpfulness.

There are so many awesome, incredible kids and families in this unit. Every family is going through a great test as they watch their child suffer from various illnesses, but each and every person we have met we have enjoyed visiting with and been thankful for their willingness to share their experiences and feelings. Sometimes it is nice to know that what we are feeling is normal, and see kids further along in this process than we are. It gives us great hope.

We had several visitors all at the same time today, which was unfortunate, because it was also the time that Leah was spiking a fever and getting medicine. Both Pastors Feldt and Kruse came to be with us for a while. The only good thing about Leah's fever is that we now have our own room. She cannot be around other children who have a supressed immune system, so this room has more room for us to accommodate our visitors.

Leah started music therapy this morning and will participate in that 2-3 times per week. She also was visited by Becky, the Golden Retriever, that comes to provide company here to children. She is much better behaved than our dog, Bernie!

On a lighter note, we truly feel the bulls-eye is on our back. This morning I sent Chris to get Leah a pull-up to use from our van. Both Leah and I were rather impatient for his return, and after waiting a very long time he called to say he was stuck in an elevator. He had to call security from his elevator phone to get them to rescue him. What are the chances of getting stuck in an elevator?

Chris is now staying at the Helen Rossi house here within the hospital. It is like a hotel within the hospital and provides a bed, shower, and laundry facilities. He worked on doing our laundry this afternoon, and we hope to watch the Hawkeyes tonight. I also hope to have a few moments to respond to the many letters I am receiving on my personal email account.