Day +29
WBC 5.7
Max has had quite a day. He was extubated at around 12 pm. He has been on an oxygen mask and until late this afternoon was saturating well. His sats dropped suddenly into the 80s. ICU came down and thought his airway was reacting. It is fairly common for kids to have some trouble during the first 24 hours after extubation. His asthma makes things worse. Please pray that Max can make it through this. They have brought the dreaded c-pap machine in here just in case and another chest x-ray was done. He has a new mask on now that delivers humidity along with the oxygen. As of 11:30 tonight he is saturating well when he is calm, but he dips quite a bit when he is upset.
HIs GVHD is described as moderate (the stages are mild, moderate, severe). He is really uncomfortable when he poops. His stools are much bloodier than ever before and his skin is really red. They are attributing the liver changes to the GVHD as well. He has been on steroids for a while so they added ATG to fight the GVH. If you recall, ATG was one of his chemo drugs. He had a hard time with this drug. It is an immunosuppresant. They are hoping it will suppress the lyphocytes (sp?), the part of the white blood cells that cause GVH, but not the neutrophils.
His blood pressure is also way up and they are trying hard to control it. They just switched one of his bp meds because the one he was on can contribute to reactive airway problems.
Getting off the vent was a very big step but he is far from being out of the woods breathing wise. It is extremely difficult to see him so uncomfortable. They are trying to ease his pain with meds that will not slow his breathing.
PRAY HARD PLEASE!
-Margaret
_____________________________________
WBC 5.7
Hello again, what you read yesterday was a very exciting update. But I asked us all not to get ahead of ourselves and here' s why: Max has Grade 2 to 3 gastrointestinal GVH (graft vs. host disease). This means that yes indeed, donor cells are growing inside Max. It also means that they don't like their new home. The effects of this GVH so far had been all in the form of diarrhea and abdominal pain. But now Max's skin rash (skin GVH) is worsening too. Also, his bilirubin is elevated which could either be a drug reaction or the sign of some stress on his liver. So while the message below is pretty positive, we didn't have the latest news. The doctors will explain things to us soon and we will update again tonight. Also, the WBC drop (from 8.9!) is hopefully just a result of stopping a growth hormone.
More to come,
Mike
Max has had quite a day. He was extubated at around 12 pm. He has been on an oxygen mask and until late this afternoon was saturating well. His sats dropped suddenly into the 80s. ICU came down and thought his airway was reacting. It is fairly common for kids to have some trouble during the first 24 hours after extubation. His asthma makes things worse. Please pray that Max can make it through this. They have brought the dreaded c-pap machine in here just in case and another chest x-ray was done. He has a new mask on now that delivers humidity along with the oxygen. As of 11:30 tonight he is saturating well when he is calm, but he dips quite a bit when he is upset.
HIs GVHD is described as moderate (the stages are mild, moderate, severe). He is really uncomfortable when he poops. His stools are much bloodier than ever before and his skin is really red. They are attributing the liver changes to the GVHD as well. He has been on steroids for a while so they added ATG to fight the GVH. If you recall, ATG was one of his chemo drugs. He had a hard time with this drug. It is an immunosuppresant. They are hoping it will suppress the lyphocytes (sp?), the part of the white blood cells that cause GVH, but not the neutrophils.
His blood pressure is also way up and they are trying hard to control it. They just switched one of his bp meds because the one he was on can contribute to reactive airway problems.
Getting off the vent was a very big step but he is far from being out of the woods breathing wise. It is extremely difficult to see him so uncomfortable. They are trying to ease his pain with meds that will not slow his breathing.
PRAY HARD PLEASE!
-Margaret
_____________________________________
WBC 5.7
Hello again, what you read yesterday was a very exciting update. But I asked us all not to get ahead of ourselves and here' s why: Max has Grade 2 to 3 gastrointestinal GVH (graft vs. host disease). This means that yes indeed, donor cells are growing inside Max. It also means that they don't like their new home. The effects of this GVH so far had been all in the form of diarrhea and abdominal pain. But now Max's skin rash (skin GVH) is worsening too. Also, his bilirubin is elevated which could either be a drug reaction or the sign of some stress on his liver. So while the message below is pretty positive, we didn't have the latest news. The doctors will explain things to us soon and we will update again tonight. Also, the WBC drop (from 8.9!) is hopefully just a result of stopping a growth hormone.
More to come,
Mike
posted by Mike Ciacciarelli
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