Monday, March 9, 2009

ROHHAD and CHEMO updates

I know we have a few updates to post. Haven had a crazy weekend with chemo. We believe it has kept her up (more than normal) over the past few days. Kris did the Saturday shift and I did the Sunday shift. I think between the two nights we had a total of 3 hours of sleep. I can't wait to sleep tonight.

Haven began Saturday with an infection in her left foot (cold foot) that was gooey. On Sunday she had three more toes that are infected on the right foot (hot foot) and they are gooey. We soaked them and cleaned them. She then took a 3 1/2 nap and by 12:30 pm on Sunday her right toe was cracked and bleeding. So we soaked them again.

Now this I felt extremely horrible about - but we were in the kitchen and she likes to help with the groceries. But I stepped on her 3rd toe (which was gooey) which my shoes. A normal child would've have screamed and cried like crazy - not to mention it's already infected. Haven just gave a big sigh and we looked at it.

AGAIN she does not feel pain but knows she is supposed to make some sort of noise.

So back to soaking to clean off any dirt and goo that I added to the toe.

She didn't have a fever so we didn't take her to the hospital. I have been told she took a huge nap this morning after I left for work! NOT FAIR! :( I want to sleep too!

Anyway, I am waiting for more conversation with Haven's doctors before I post any updates.

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