December 18, 2005

Happy Birthday, Aunt Suzanne! We were lucky enough to have Suz stay with us last night, even though she probably did not have a very exciting birthday. Leah's present to her was ten hard pinches on her face. So much for the pinch to grow an inch. We also gave her many birthday spankings.

Our day began quite nicely. Leah had a fever this morning, but aside from that, was in a good mood and had a fun time with Suzanne and James. Early on in the morning we were informed that she would be having a CT scan and could not eat or drink. While this was not good news, we managed to keep Leah busy enough that she did not complain about this. Suzanne ran some errands and let Leah give James a meal she had bought for him at his favorite restaurant. Usually when James is summoned by Leah because she has something for him it has to do with a bodily function. Imagine his surprise when he found his favorite meal waiting for him. We went to the library and Leah was quite lively. Around 2:30 Suzanne left to go back to Des Moines, and unfortunately our day took a turn for the worse.

Leah's first CT scan does not bring back pleasant memories. She had a hard time with her sedation then and was very scared. Today we had to repeat many of the same events. The barium drink left her crying. She had to get an IV. All of this I found difficult to watch. It is hard to see her suffer and in pain. We had completed the barium drink and had started taking her oral sedation medicine when she began vomiting. She continued vomiting for a bit, and did not manage to keep any of the sedation medication down. Plan B was to put in her IV and then give her a sedative in her IV when we arrived for the CT. This was done, and while she became groggier, it did not sedate her. A second dose was given and Leah became more agitated. The resident was then called and morphine was administered. This, too, had no effect. And finally a third dose of the IV sedative was given without any success in helping Leah go to sleep. They ended up not performing the CT scan at all, and we are perhaps needing to do this tomorrow under general antesthesia. While Leah did not fall asleep with these sedatives, she did become agitated and quite loopy. We have noticed that each time Leah is sedated she fixates on things. This time she fixated on her IV she wanted removed. This fixation where she cries and yells about this one thing can go on for hours. The good thing is that we know this is the medication that is making her behave this way. She will not remember these things in the morning. The bad thing is that it is quite wearing and hard to distract her. Tonight she is just falling asleep at 10:30 despite all of the sedatives she has received. At this point in time I am much calmer than I was while this was playing out. Watching Leah be put through all these things, and then not to have them work has been very stressful.

The good news is that she has been feverless since this morning. However, since she has had so many fevers we may still have to do the CT scan. I understand the need to err on the side of caution, yet wish they would be satisfied with how she feels tomorrow when they see her. Dr. DiPaola will see us tomorrow, and I have many questions for him about what their plans are for Leah's treatment.

Leah received her second GCSF shot tonight. She did not like it, but I don't think it hurt her as badly as the first one did. I made sure to ask about a numbing cream to give her before the shot is administered. I have heard from many parents the need to be her advocate. This is certainly true. If there are things I can do to make procedures less painful and traumatic, then I will certainly try to do them for her. Yesterday her counts were under 400. She must receive shots until her counts are above 10,000. Today her counts are at 6,000. A good recovery in a day's time.

I am hoping to get some much needed rest tonight. Tomorrow may be another day full of medical procedures. The nurse has warned me that she will need her IV flushed with saline in the morning so that it is still usable, and she will need to have the needle on her port changed as well tomorrow, another routine that occurs every 7 days.

We are continuing to be in need of many prayers.