What a week!

So, our rough luck continued beyond Sunday. I am just now getting to post. We went back into the ER early Tuesday morning. Hans had some serious diarrhea at about 2:30 am, then we noticed a fever, first of 102.2 and then it rose to 103. something, then he had more diarrhea, we called the oncall doc and headed down to the ER. The poor baby was vomiting on the way down. We got there at about 6am. They just gave Hans fluids, and, figuring it was likely viral, didn't dose him with Antibiotics. He only vomited once more at the ER. We were sent home by 3pm. My mom was supposed to fly out on Tuesday, but pushed her flight back to Wednesday. Then, early Wednesday morning, Hans had another fever, we gave him Tylenol and then watched it continue to rise. At 1:30 am it hit 103.9 so we called the oncall docs once again, and we were headed down to the TCH ER for the second consecutive late night/early morning run. He was again given fluids and stress doses of Hydrocortisone via IV, and this time a broad spectrum antibiotic. Just in case. They are still thinking it was viral. We were sent home just after 7, and somehow Kevin went into work after those two rough nights. Hans has remained borderline stable. He is not totally wanting to drink, so we are forcing it on him. His diarrhea hasn't completely subsided and he just acts like his tummy doesn't feel right. He isn't eating much.

Then, on Thursday, I decided to keep his TCH Dental appointment. I was pleased that they only found one small cavity which they said I could sit on and come back in 6 months! Thank God! With all the sugars we have had to push on him to keep him stable, I thought it might be much, much worse. In fact I totally lost it in the dental room and the tech just gave me a big hug and said, "You've gotta keep his sugars up, mama!" She made me feel better and deserves a gold star!

We also met with Dr. Russell for a conference after all this yucky stuff has been going on. She told us she wants to keep Hans off Accutane for December and January. She suspects that the Accutane is somehow acting to weaken Hans' already compromised immune system. I took this news pretty hard, as Accutane is the best known defense against the significant risk of relapse. We just need your prayers now, for Hans' increased health and stability; for Hans to get well enough to continue his course of Accutane. Hans is a complicated case and he is sort of charting the course for how to recover from the Neuroblastoma treatment protcol without the benefit of adrenal function. Thank you for including him in your prayers. Thank you for going online to http://www.lunchforlife.org/ and giving a little to help fund research to make these treatments better.

The up side was that my mom was here for all three trips to the ER. Can you imagine what a blessing that was? Elle was taken care of, she got to school, managed to keep up with all her homework and reading and extra projects this week. She's quite the young lady!

I'll keep you posted. We meet with TCH Endocrine on Monday, and Hans has his monthly office visit on Tuesday. I'm once again logging many hours in the car to and from the hospital. But - I've been checking out books on tape from the library. It helps and Hans doesn't mind at all!

Thanks again for your prayers. And, thanks to Laurie Miller for taking care of Elle and getting her to the Pump it Up party on Tuesday while we hung out with my mom and stayed home with Hans. Sorry to Alana, for having to cancel taking care of Zach while you wre at your pre-op appointment. I'm glad to hear the op went well! Sorry to Glen Loch for backing out as a chaperone for Tuesday night's party! Guess I should try not to commit to too much these days!

Lara