January 21, 2006

Once again Chris and I have made the trade. He is in Iowa City with Leah for the night and I am in Denver with Chloe.

Leah had a long and sleepless night on Friday/Sat. She is being well hydrated so her body can deal with the cisplatine they are giving her, so she has to use the bathroom often. They are scheduled to wake her every two hours, but she usually woke on her own every 90 minutes. Besides the bathroom visits she had labs drawn from her port two different times, vitals taken, and her machines beeping after different doses of fluids were finished being administered. The one resident came to see her at 7:30 this morning and I did no more than grunt at her. It felt like we had just gone to bed. I suggested sleeping all day to Leah, but she insisted we should get up and at least go to the library. So, around 9 she had her last blue yogurt and we decided to be awake. This weekend Dr. Rajiv is on call. We have met him once before and I have liked him both times. He also came around 9, so we were through with doctor visits early in our day. The one thing we did discuss is that she was secreting glucose in her urine, so they changed her fluids they were hydrating her with. Dr. Rajiv was not concerned with this and said it is common with different chemotherapy protocols because in an effort to hydrate the body well they give it a large amount of fluids. The kidneys are only able to filter a certain amount and Leah's had reached their limit. It is all a big balancing act because whatever Leah's urine output is, they replace that with fluids. Her input must always be greater than her output, so the more she goes to the bathroom, the more fluids she gets. It is a vicious cycle.

Chris, my mom and Chloe came down around 3 pm. Earlier in the day we had deaccessed Leah's port. Her needle needs to be changed every seven days to prevent infection. I knew Leah would not like this at all, and I was right. She did enjoy being off of her IV pole for a while and we even had a running race to the elevator on our way to the library. It felt great to be "normal" even if it was only for an hour. Right before Chris, Chloe and my mom came Kristi reaccessed Leah. There are always tears, but it is over quickly. Chloe was in fine form again today. She is getting to know Kristi, too, and is much happier to see everyone in the hospital than Leah is. Around 4:30 I left with my mom and Chloe to Leah's loud screaming and wailing. This is painful for all to listen to, but a large part of it was her fatigue from lack of sleep. She really had done a great job of acting fairly happy and cooperative up until then.

Despite the fact that she had a heavy chemo drug last night that is known to cause nausea, Leah ate a lot today by the time I left. She had yogurt for breakfast, a cookie from my mom, a chicken nugget, macaroni and cheese, a small piece of pizza and a few fries-all by 4 PM. Her desire to drink is quite diminished because of all the fluids she is getting. I am working on having the doctors agree to stop giving her fluids when we come in for fevers. That would mean she would be accessed, but just have a tube under her shirt they would hook up to her pole when she got antibiotics and do all her own drinking. We would be without a pole much of the time. I have noticed other kids in this situation a lot of the time and think Leah would be much happier to go places if she did not have this enormous pole we cart with us.

The scan is still scheduled for 8:15 on Monday morning. There will be some prep prior to that because she will be under general anesthesia. They have blocked off an hour and half for this. No one knows how long it will take since they are looking for some good images and various angles. There has been a great deal of prayer offered up for Leah already, and we ask that you continue to pray for her each day, especially now as we are waiting to hear of the chemotherapy's effectiveness.