Day +54
WBC 6.0
As someone pointed out to me today, you just can't play a sad song on a banjo. When the blues man wants to lay down a song of heartbreak and loneliness, he doesn't pick up a banjo. So to the gray-haired, ponytailed music man who comes to the Ronald McDonald House every Tuesday afternoon, thank you. And when my daughter sings along with you, just know that you are playing the happiest instrument in the world.
We are once again adjusting to life on the vent. We have lots of questions about what will happen if (when) he is extubated, but Max still has to make progress working with the machine. Today he did just that. He began to breathe easier, working well with the machine, and was able to breathe with less oxygen support. Not much else to report, time moves glacier-slow when on the vent. Progress is measured in tiny mechanical increments, and we have a long way to go. Diaper-wise, there's still blood in his stool, but it is more black-green, and more sludgy and that's a step in the right direction.
Gracie, Grandma Chick, and Margaret all went to the Como Zoo in St. Paul. It's a free zoo along the lines of Lincoln Park Zoo in Chicago and Grace had a good time looking at the polar bear. It was good for Margaret and Grace to get out, and nice of Grandma to drive. Then there was the banjo-playing music guy "shave and a haircut, two bits!" and an art project tonight at the Ronald McDonald House. Once again we must say that the Ronald McDonald House of the Twin Cities is an amazing place and everyone reading this should know that these houses are for families of critically ill kids and they need all the support you can offer. Please check out your local RMH and see what you can donate or what you can do to help. Max's Auntie Dana already cooked a meal for the RMH near Loyola (where Max was born) and we hope to be able to return the generosity we've received when we get home.
Thanks also for all of the cards, emails, and packages we've received lately. Our mailboxes have been bursting with such wonderful surprises from so many people and it's helped to put some of the overwhelming frustration and disappointment we've been feeling at bay.
--mike
As someone pointed out to me today, you just can't play a sad song on a banjo. When the blues man wants to lay down a song of heartbreak and loneliness, he doesn't pick up a banjo. So to the gray-haired, ponytailed music man who comes to the Ronald McDonald House every Tuesday afternoon, thank you. And when my daughter sings along with you, just know that you are playing the happiest instrument in the world.
We are once again adjusting to life on the vent. We have lots of questions about what will happen if (when) he is extubated, but Max still has to make progress working with the machine. Today he did just that. He began to breathe easier, working well with the machine, and was able to breathe with less oxygen support. Not much else to report, time moves glacier-slow when on the vent. Progress is measured in tiny mechanical increments, and we have a long way to go. Diaper-wise, there's still blood in his stool, but it is more black-green, and more sludgy and that's a step in the right direction.
Gracie, Grandma Chick, and Margaret all went to the Como Zoo in St. Paul. It's a free zoo along the lines of Lincoln Park Zoo in Chicago and Grace had a good time looking at the polar bear. It was good for Margaret and Grace to get out, and nice of Grandma to drive. Then there was the banjo-playing music guy "shave and a haircut, two bits!" and an art project tonight at the Ronald McDonald House. Once again we must say that the Ronald McDonald House of the Twin Cities is an amazing place and everyone reading this should know that these houses are for families of critically ill kids and they need all the support you can offer. Please check out your local RMH and see what you can donate or what you can do to help. Max's Auntie Dana already cooked a meal for the RMH near Loyola (where Max was born) and we hope to be able to return the generosity we've received when we get home.
Thanks also for all of the cards, emails, and packages we've received lately. Our mailboxes have been bursting with such wonderful surprises from so many people and it's helped to put some of the overwhelming frustration and disappointment we've been feeling at bay.
--mike
posted by Mike Ciacciarelli
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