Day +5
What a day! It started with a phone call at 6am. I jumped out of bed and answered. "Do you mind if we clip Max's hair?" It was my wife. "Sure" I said, "I can't wait to see him." A couple of hours later I awoke with a gymnastic 3 year old vaulting off my torso and the fading dream of my son, suddenly bald, suddenly capable of stunt doubling for Mini Me.
But it was no dream. When Grace and I arrived at the hospital for the big switch, both Grace and Max lit up. "Look at him, Daddy, loooooook at himmmmm!" Then I got a chance to rub my hand across his little head and it felt so stubbly one way and so smooth coming back. And it may just be the impartiality of fatherhood talking, but he looks good bald. Our little cueball's cheeks and eyes look bigger and his dimple is even cuter than ever. Nurses and aides who had heard of the clipping stopped by throughout the day and they all agreed, the cut was very becoming.
Once alone with Max and once I got used to the new look I was reminded of the many concerns of only a day earlier. But soon pulminology came in and said that they heard some improvement in the wheezing and that Max might be able to space out his treatments from 2 back to 4 hours apart. That order finally came in a few minutes ago, at about 10 o'clock. So they hear improvement. They did add that they reserve the right to give treatments as often as every hour if necessary. Anything to stay off the vent. Of course, if we have to we have to and we heard from a few families today whose children needed to be intubated during this time and they did OK. Again, I don't know where we'd be without the community of Hurler families. Thank you all so much.
The new platelet parameter means that Max should bruise less often and hopefully be at less of a risk for internal bleeding. So far so good. He got some more tonight. It's gotta match his blood type and that will change so they have to check that often. Right now it's so early that it still needs to match Max's original type.
Finally in butt news, his little bottom is finally improving. We've been using ILEX which is a little like using rubber cement but it works. And in other news, some college kids showed up at Ronald's House tonight for a big Lego project. Margaret called me to tell me that Grace won the contest for "Best Speedboat" which, considering she's never seen one, certainly proves the concept that kids like to win stuff.
That's about it, the roller coaster continues, the dreaded days are fast approaching so continue to send all those good thoughts for strength up north and we'll pass them along to Max (Baldy).
Oh no!
He's awake . . .
Good night (I hope),
Mike
But it was no dream. When Grace and I arrived at the hospital for the big switch, both Grace and Max lit up. "Look at him, Daddy, loooooook at himmmmm!" Then I got a chance to rub my hand across his little head and it felt so stubbly one way and so smooth coming back. And it may just be the impartiality of fatherhood talking, but he looks good bald. Our little cueball's cheeks and eyes look bigger and his dimple is even cuter than ever. Nurses and aides who had heard of the clipping stopped by throughout the day and they all agreed, the cut was very becoming.
Once alone with Max and once I got used to the new look I was reminded of the many concerns of only a day earlier. But soon pulminology came in and said that they heard some improvement in the wheezing and that Max might be able to space out his treatments from 2 back to 4 hours apart. That order finally came in a few minutes ago, at about 10 o'clock. So they hear improvement. They did add that they reserve the right to give treatments as often as every hour if necessary. Anything to stay off the vent. Of course, if we have to we have to and we heard from a few families today whose children needed to be intubated during this time and they did OK. Again, I don't know where we'd be without the community of Hurler families. Thank you all so much.
The new platelet parameter means that Max should bruise less often and hopefully be at less of a risk for internal bleeding. So far so good. He got some more tonight. It's gotta match his blood type and that will change so they have to check that often. Right now it's so early that it still needs to match Max's original type.
Finally in butt news, his little bottom is finally improving. We've been using ILEX which is a little like using rubber cement but it works. And in other news, some college kids showed up at Ronald's House tonight for a big Lego project. Margaret called me to tell me that Grace won the contest for "Best Speedboat" which, considering she's never seen one, certainly proves the concept that kids like to win stuff.
That's about it, the roller coaster continues, the dreaded days are fast approaching so continue to send all those good thoughts for strength up north and we'll pass them along to Max (Baldy).
Oh no!
He's awake . . .
Good night (I hope),
Mike
posted by Mike Ciacciarelli
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