Thursday, January 17, 2008
Elijah is doing okay today. He spiked a fever of 103.0 early afternoon and that always makes him feel lousy, on top of everything else. So since he had a fever they had to do cultures from both his port and his arm. They were able to use EMLA cream (numbing cream), but he had moved his arm wrong and it didn't numb in the right spot so it didn't have much affect. I don't know if he was having a better day or if he is just getting use to everything they have to do to him. He still puts up a fight, but it seemed to be slightly less intense today. Maybe I'm just getting use to it so it doesn't seem as bad?? Dr. Al-Zein is worried that they haven't been able to get his high blood pressure under control. We have been giving him a routine medication twice a day that he has already increased once, and on top of that a medication every four hours when his blood pressure is high. They thought in the last few days that a lot of it had to do with his discomfort, but he seemed to be better today and it's still high. He ordered an ultrasound of his kidneys to make sure there isn't a blockage that is causing it to go high and we will find out the results of that tomorrow. Dr. Al-Zein also consulted a pediatric nephrology (kidney/vascular) doctor, Dr. Auron. He stopped in and talked to us and said depending on the results of the ultrasound he might start him on yet another blood pressure medication to try and control this a bit better. What's one more at this point, right? Dr. Al-Zein also said to me today that he has to keep reminding himself that Elijah started out with a 800K white count and isn't the "typical" leukemia patient. He said the majority of leukemia patients come in with a 3K white count, they take care of that, start chemo and usually in a week they feel better and they're counts are up enough that they can go home. Elijah was very different in that respect and that's why it's going to be more challenging to get him out of this acute critical phase. This is starting to become redundant, but maybe I need to be reminded of this too because I just think that he should be getting better each day. As much as we seem to be doing with him that only seems reasonable. I think this is just a big learning experience for all of us and a different kind of sickness than we have ever been exposed to. Elijah now has several bald spots in his hair and the rest of it is very thin. I really want to buzz it because hair is everywhere, but for any of you that know how big of an ordeal this was before he was sick would understand that it's not really an option. I can't bring myself to do one more thing to him that he doesn't want done. Today I was running my fingers through it and getting lots of it out so I decided to get a baggie to collect it in. He saw what I was doing and after I showed him the baggie with daddy's hair in it he pulled a few out himself and shortly after said "that's enough". He was also taken a liking to sleeping on his stomach. This sometimes gets a little tricky when the IV tubing gets all wrapped around him. I want to send out a HUGE thanks to my friends and co-workers in Maternity. Amanda (friend from work) brought up a very nice gift from everyone at work and we truly feel like we don't deserve to have such great people around us to support us. Thank-you all so much for that, we can't begin to tell you how much we appreciate it. That's all for now, good night. Love you all!!