Day +57
WBC 3.8
Max was extubated for the 3rd time at about 2:45 this afternoon. Soon afterward the ENT came and looked at his upper airway via a camera that was threaded down his nose. His upper airway looks good. This leaves us wondering what is really going on with him. It is possible that he had an upper airway obstruction before that is now gone. He is a little wheezy in the right upper lobe. We are kind of shocked that no one from pulmonary has been by today AT ALL - not before or after extubation. Max's pulmonary treatment plan was just written up by Dr. Sweeney of the PICU (who we absolutely love), but we thought pulmonary was going to be more involved considering Max's history. We do not know how his chest x-ray was this morning or if the bronch worked to clear that right upper lobe.
Right before Max was extubated he had a huge diaper that was much bloodier than they had been all week. This was a huge disappointment, as you can imagine. We have to talk to BMT about this. The yeasty rash that was on his diaper area and neck seems to have spread.
We were sad to learn that another 4A patient lost his life. We met Dan's mother at the Days Inn back in June when we first came to MN. He had leukodystrophy, and was 27 years old. He was misdiagnosed for years, and he and his family suffered greatly. I knew he was having a lot of trouble the past few days, but was shocked to see his room was clear this morning when I came in. I only wish I had a chance to talk to his mother one more time. There are also some kids at RMH who really, really need prayers right now.
I will send another update tonight if anything major happens - let's hope you don't hear from me until tomorrow!
-Margaret
Max was extubated for the 3rd time at about 2:45 this afternoon. Soon afterward the ENT came and looked at his upper airway via a camera that was threaded down his nose. His upper airway looks good. This leaves us wondering what is really going on with him. It is possible that he had an upper airway obstruction before that is now gone. He is a little wheezy in the right upper lobe. We are kind of shocked that no one from pulmonary has been by today AT ALL - not before or after extubation. Max's pulmonary treatment plan was just written up by Dr. Sweeney of the PICU (who we absolutely love), but we thought pulmonary was going to be more involved considering Max's history. We do not know how his chest x-ray was this morning or if the bronch worked to clear that right upper lobe.
Right before Max was extubated he had a huge diaper that was much bloodier than they had been all week. This was a huge disappointment, as you can imagine. We have to talk to BMT about this. The yeasty rash that was on his diaper area and neck seems to have spread.
We were sad to learn that another 4A patient lost his life. We met Dan's mother at the Days Inn back in June when we first came to MN. He had leukodystrophy, and was 27 years old. He was misdiagnosed for years, and he and his family suffered greatly. I knew he was having a lot of trouble the past few days, but was shocked to see his room was clear this morning when I came in. I only wish I had a chance to talk to his mother one more time. There are also some kids at RMH who really, really need prayers right now.
I will send another update tonight if anything major happens - let's hope you don't hear from me until tomorrow!
-Margaret
posted by Mike Ciacciarelli
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