Day +26
WBC 3.8
Today Margaret, Grannie & Grace celebrated girls day (or "Girl Scout Day", Troop #99 as Grace called it) with a trip out for haircuts and lunch while the boys held down the fort at the hospital. Max's big event was another bronchoscopy. His lower left lung didn't show much improvement since yesterday so they decided to take a look around.
I got to stay in the room, and it was pretty cool to see Max from the inside out. A bronchoscopy involves sticking a tiny camera down his breathing tube. The fellow operated the camera and the doctor was there to guide him if he made any wrong turns. It was kind of like sitting in the back seat for many of the trips to New Jersey with my parents. But I digress. Once inside they washed out the affected area and also took note of the general health of the lung. You could see some of the mucus and blood and some of it came all the way out and went in a jar for testing. We should know some more about what's going on tomorrow and in the coming days. Overall, the doctor was surprised to see a healthier lung than she expected. As for extubation, his lung needs to continue to improve and the x-rays need to remain clear before they can challenge him again but that is looking like it will be in the coming days.
Max is still unable to talk to us and overall is still very much "out of it." In addition he is molting. I don't know what kind of creature is going to come out of his skin but I'll bet it's an angry one from being kept down for so long. He also is a little rashy on his legs but so far there isn't need to biopsy for GVH. His favorite activity is to rub his forehead and nose with the back of his hand. This seems like very deliberate behavior, but he doesn't really wake up for it. He just rubs in his sleep. It's hard to be patient with our patient at this point, we want that tube out, but he needs it in order to heal up. He is, without a doubt, going in the right direction. Not necessarily in a straight line, but in the right direction. The best evidence of that is that his counts continue to climb.
Thanks for all the support on the website, your notes to us are our little buoys to keep us afloat. Please continue to pray for Max and for us and for all the families of sick children.
Good night,
--mike
Today Margaret, Grannie & Grace celebrated girls day (or "Girl Scout Day", Troop #99 as Grace called it) with a trip out for haircuts and lunch while the boys held down the fort at the hospital. Max's big event was another bronchoscopy. His lower left lung didn't show much improvement since yesterday so they decided to take a look around.
I got to stay in the room, and it was pretty cool to see Max from the inside out. A bronchoscopy involves sticking a tiny camera down his breathing tube. The fellow operated the camera and the doctor was there to guide him if he made any wrong turns. It was kind of like sitting in the back seat for many of the trips to New Jersey with my parents. But I digress. Once inside they washed out the affected area and also took note of the general health of the lung. You could see some of the mucus and blood and some of it came all the way out and went in a jar for testing. We should know some more about what's going on tomorrow and in the coming days. Overall, the doctor was surprised to see a healthier lung than she expected. As for extubation, his lung needs to continue to improve and the x-rays need to remain clear before they can challenge him again but that is looking like it will be in the coming days.
Max is still unable to talk to us and overall is still very much "out of it." In addition he is molting. I don't know what kind of creature is going to come out of his skin but I'll bet it's an angry one from being kept down for so long. He also is a little rashy on his legs but so far there isn't need to biopsy for GVH. His favorite activity is to rub his forehead and nose with the back of his hand. This seems like very deliberate behavior, but he doesn't really wake up for it. He just rubs in his sleep. It's hard to be patient with our patient at this point, we want that tube out, but he needs it in order to heal up. He is, without a doubt, going in the right direction. Not necessarily in a straight line, but in the right direction. The best evidence of that is that his counts continue to climb.
Thanks for all the support on the website, your notes to us are our little buoys to keep us afloat. Please continue to pray for Max and for us and for all the families of sick children.
Good night,
--mike
posted by Mike Ciacciarelli
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