Day +27
WBC 7.1
ANC 6.3
I’ve added a new feature to our update – the absolute neutrophil count, or ANC for short. The neutrophils are a part of the WBC that fight infection. Kids get a "hall pass" when their ANC is greater than .5 for three consecutive days. Why am I mentioning this now? Well, I realized today that if Max wasn't on the vent he'd be able to venture out into the hallway.
Max had two very significant events today. He had two pressure support trials, where they turn down the vent and see how he does breathing on his own. He is getting them once a shift and they last 2 hours. Once they are done they check his blood gases. He did very well with his trial this afternoon and is finishing up another right now. So far so good, but we won't have the blood gas back for a little while. He should have another trial during the night. If he continues to do well with the trials then they will keep extending the length of them. The ICU fellow told me that if he is handling 4 hour trials well then it is a sign he is ready to come off the vent. His chest x-ray showed improvement in the left ventricle as well. Every four hours he gets his albuterol inhaler and he is suctioned and vibrated.
Unfortunately he spiked a temp this evening of 100.8. He received Tylenol and his blood was sent to the lab for cultures. We joked that the lab is going to have to open up a separate room for all of the cultures they have taken from Max.
Tomorrow the GI team will be performing a scope and biopsy of Max's intestine to check for GVHD. His diarrhea continues and he still has a rash on his legs and arms. The rash has been around for a week now and at times it seems to fade or flare up. The biopsy will tell us more. If it is GVHD they will treat it with steroids and hopefully it will respond.
As you probably noticed his counts are sky rocketing, so they took Max off his G-CSF (growth hormone). We hope and pray that they are donor cells growing not Max's cells rebounding after the sepsis.
Thanks for your continued support. Please pray for Max's Hurler friend Sophie. She is a beautiful baby girl in England who got her transplant today. Her link is http://www.melroseroad.co.uk/ if you would like to leave a message in her guest book.
-Margaret
ANC 6.3
I’ve added a new feature to our update – the absolute neutrophil count, or ANC for short. The neutrophils are a part of the WBC that fight infection. Kids get a "hall pass" when their ANC is greater than .5 for three consecutive days. Why am I mentioning this now? Well, I realized today that if Max wasn't on the vent he'd be able to venture out into the hallway.
Max had two very significant events today. He had two pressure support trials, where they turn down the vent and see how he does breathing on his own. He is getting them once a shift and they last 2 hours. Once they are done they check his blood gases. He did very well with his trial this afternoon and is finishing up another right now. So far so good, but we won't have the blood gas back for a little while. He should have another trial during the night. If he continues to do well with the trials then they will keep extending the length of them. The ICU fellow told me that if he is handling 4 hour trials well then it is a sign he is ready to come off the vent. His chest x-ray showed improvement in the left ventricle as well. Every four hours he gets his albuterol inhaler and he is suctioned and vibrated.
Unfortunately he spiked a temp this evening of 100.8. He received Tylenol and his blood was sent to the lab for cultures. We joked that the lab is going to have to open up a separate room for all of the cultures they have taken from Max.
Tomorrow the GI team will be performing a scope and biopsy of Max's intestine to check for GVHD. His diarrhea continues and he still has a rash on his legs and arms. The rash has been around for a week now and at times it seems to fade or flare up. The biopsy will tell us more. If it is GVHD they will treat it with steroids and hopefully it will respond.
As you probably noticed his counts are sky rocketing, so they took Max off his G-CSF (growth hormone). We hope and pray that they are donor cells growing not Max's cells rebounding after the sepsis.
Thanks for your continued support. Please pray for Max's Hurler friend Sophie. She is a beautiful baby girl in England who got her transplant today. Her link is http://www.melroseroad.co.uk/ if you would like to leave a message in her guest book.
-Margaret
posted by Mike Ciacciarelli
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