Day +22
WBC 0.5
Today was a very slow, very uneventful day. And in his state, that is a very good thing.
Max remains on the vent with a few variations. His oxygen percentage is relatively low (38%) and his respiratory rate from the machine went from 18 to 16 per minute. They also changed his pain/sedation med from morphine to Dilaudin. This hopefully will make him less itchy. He was rubbing his hand over his nose and eyes as doses wore off. As they made the change, Max was really rubbing a lot, and his breathing rate went as high as 65 breaths per minute. Dr. Sweeney from ICU told me this was a good neurological sign because it showed Max still has a determination to breathe a lot on his own.
The plan is to move very slowly towards getting him off the vent. His x-rays continue to show clearer and clearer lungs. His blood gases are still showing the proper results for good oxygen and carbon dioxide. These numbers and the overall stability of his blood pressure are the best signs that he is improving. To look at him, however, it is hard to make that same impression. He is still so heavily sedated and his face is so squished together it looks like he could audition for Finding Nemo (or as we told Grace tonight, Finding Chemo).
As always, the fear is there. The reality of the horrors of what we're going through are all around us. But we must remember the little victories. I'll take Max's extra breaths, blown up through a tube, above and beyond a machine because he was listening to his Maisy video. And I'll take Grace leaning against Max's crib with me reading a farm book from start to finish. She knows he's "sleeping" but he can hear us. Again she decided to nap for Mom which is so necessary. Thank God we have Grace to help put Mom to sleep because she'd never do it on her own.
Every night before I go to bed here in the hospital I play "Feather by Feather" by (Smog) which is mostly about someone who's constantly beating himself up and losing his wings "feather by feather" but ends with the following words:
It's Ali vs. Clay,
Both pummeling away.
The champ always fights himself.
But you are a fighter.
You are a fighter.
You are a fighter
The kid's got heart.
The kid's got heart.
The kid's got heart.
Max's body might be fighting himself. But the kid's got heart. And I love him so much.
--mike
Today was a very slow, very uneventful day. And in his state, that is a very good thing.
Max remains on the vent with a few variations. His oxygen percentage is relatively low (38%) and his respiratory rate from the machine went from 18 to 16 per minute. They also changed his pain/sedation med from morphine to Dilaudin. This hopefully will make him less itchy. He was rubbing his hand over his nose and eyes as doses wore off. As they made the change, Max was really rubbing a lot, and his breathing rate went as high as 65 breaths per minute. Dr. Sweeney from ICU told me this was a good neurological sign because it showed Max still has a determination to breathe a lot on his own.
The plan is to move very slowly towards getting him off the vent. His x-rays continue to show clearer and clearer lungs. His blood gases are still showing the proper results for good oxygen and carbon dioxide. These numbers and the overall stability of his blood pressure are the best signs that he is improving. To look at him, however, it is hard to make that same impression. He is still so heavily sedated and his face is so squished together it looks like he could audition for Finding Nemo (or as we told Grace tonight, Finding Chemo).
As always, the fear is there. The reality of the horrors of what we're going through are all around us. But we must remember the little victories. I'll take Max's extra breaths, blown up through a tube, above and beyond a machine because he was listening to his Maisy video. And I'll take Grace leaning against Max's crib with me reading a farm book from start to finish. She knows he's "sleeping" but he can hear us. Again she decided to nap for Mom which is so necessary. Thank God we have Grace to help put Mom to sleep because she'd never do it on her own.
Every night before I go to bed here in the hospital I play "Feather by Feather" by (Smog) which is mostly about someone who's constantly beating himself up and losing his wings "feather by feather" but ends with the following words:
It's Ali vs. Clay,
Both pummeling away.
The champ always fights himself.
But you are a fighter.
You are a fighter.
You are a fighter
The kid's got heart.
The kid's got heart.
The kid's got heart.
Max's body might be fighting himself. But the kid's got heart. And I love him so much.
--mike
posted by Mike Ciacciarelli
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